MD-List : Messages : 22410-22439 of 22639

Michael Keen,
Spirit Roller Ministries-Director
Commissioned Minister
Joni and Friends Affiliate
www.spiritrollerministries.org
Phone:   804-477-1802
Cell:      540-448-3824
Fax:       540-932-8933

"I can do all things through Christ who strengthens me."Philippians 4:13

----- Original Message -----

From: Dan'l Markham

To: Jon Ebersole/US Field Services-Chicago ; Kara Ferris ; MinAc Bonnie Nakasuji ; MinAc Dan & Melynda Adragna ; MinAc Daniel J. Vance ; MinAc Dawn Traficanti ; MinAc Diane Prairie ; MinAc Dick and Judy Ford ; MinAc Don Bania ; MinAc Elisabeth Colcol ; MinAc Iris Smith ; MinAc Jane Wampach ; MinAc Janine Hults ; MinAc JoyPMall ; MinAc Judy Siegle ; MinAc Mark and Cheryl Haggard ; MinAc Mary Jane Ponten ; MinAc Rick Eastin ; MinAc Tait Berge ; MinAff Bondi Ministries ; MinAff Elder Source Stan Means ; MinAff Global Transformation - Diana ; MinAff Global Transformation - Terry ; dianagtn1@... ; MinAff Hurdling Handicaps ; MinAff Life Compass Kim Fletcher ; Minaff Life Without Limbs Nick ; Minaff MUPS Tim Swauger ; MinAff NATHHAN CHASK ; MinAff NATHHAN CHASK ; Minaff Need Project Bob West ; MinAff Rest Ministries Lisa Copen ; MinAff Standing With Hope ; MinAff Thru the Roof ; MinAff Voyages Unbound ; mkeen@...

Cc: Melany Ethridge ; Doug Mazza ; Billy Burnett ; Steve Bundy ; Kathy McReynolds ; Sharyn Brautigan-King ; jkingery@... ; jebersole@... ; John Wern ; Ken Chambers ; sbuxton@...

Sent: Monday, November 02, 2009 1:29 PM

Subject: FW: Christian Institute on Disability Responds to New Health Care Bill (news release) ALR:00201188

Dear Jon, Filed Office Leaders, Chapter Leaders, Associates and Affiliates,

I believe the press release form JAF�s Christian Institute on Disability (below and attached) is of critical importance to your communities and the people you serve.

God bless you as you work on the behalf of Christ in ministering to the most vulnerable.

Sincerely in Christ,

Dan'l

Rev. Dan'l C. Markham
Managing Director
Joni and Friends
Direct Line: 818-575-1736


	FOR INFORMATION CONTACT: Melany Ethridge 972.267.1111 melany@...	FOR IMMEDIATE RELEASE
	THE CHRISTIAN INSTITUTE ON DISABILITY RESPONDS TO NEW HOUSE HEALTH CARE BILL: Disability Advocates Question Who Will be the Gatekeeper
	AGOURA HILLS, Calif., Nov. 2, 2009 � House Democrats announced last week that the new health care bill does include a public option. The co-sponsors of this bill claim that it guarantees that up to 96 percent of Americans will have coverage. They also claim that the bill will make it easier for individuals to purchase insurance and it will prevent insurance companies from denying coverage to those with pre-existing conditions. However, if the government is going to play a larger role in health care delivery, who will be the gatekeeper? Will this larger governmental role lower costs and improve quality? �Those with disabilities, the chronically-ill, and the elderly are the very ones who need quality health care the most,� says Joni Eareckson Tada, the Founder and CEO of Joni and Friends (JAF) disability ministry. �And because that care can also be the most expensive, we are concerned that these most vulnerable will represent the ones whose lives are determined not worthy of the cost.� National health care reform continues to be one of the most important issues facing Americans, and the current initiative raises many questions about gate-keeping that concern JAF and its public policy initiative, the Christian Institute on Disability (CID). �We at the CID understand the desire to provide health care for every American,� CID Public Policy Director Dr. Kathy McReynolds said. �However, we are very concerned that health care reform could force insurance companies or the government to begin to discriminate against the most vulnerable because they may not meet certain outcomes required by evidence-based medicine. The gatekeeper should be the health care provider who has the best interest of the patient as a primary concern. This reflects the long tradition of Hippocratic medicine.� �JAF believes this scenario would clearly undermine the sanctity of life principle, which until modern times provided the foundation of Western medicine. The Western ethic was informed by an absolute respect for the sanctity of life and this principle has historically supported the ethics of medicine. The American public has yet to grasp the enormous consequences of a move away from this sanctity of life principle,� JAF President Doug Mazza said. Tada understands that those who care about these issues and who want to uphold a culture of life must engage in the marketplace of ideas. This led her to establish the CID, one of the newest initiatives of her worldwide disability ministry. A vital component of the Institute is its Public Policy Center, with a primary objective to address the most pressing issues in medicine today. Despite her paralysis, which has left her a quadriplegic in a wheelchair for more than 40 years, Joni Eareckson Tada works tirelessly every day to fulfill her vision to help society�s most vulnerable. Tada is passionately concerned about the many issues currently being debated in the medical arena, such as health care reform, reproductive technologies, and end of life care. Mazza explained that this is why the CID was established � to educate the church on these important ethical concerns in medicine. �The Public Policy Center is a vital resource to prepare Christians who will inevitably face these life and death questions,� he added. Long before they were considered �hot topics,� Tada and the staff at the CID anticipated the ethical issues surrounding embryonic stem cell research and the removal of nutrition and hydration. They believe that Terry Schiavo�s death on March 31, 2005, was a wake-up call to the Christian community that the lives of the most vulnerable are under threat. The CID continues to lead the charge by providing a biblical response to these issues that are now a part of the national conversation. Celebrating its 30th anniversary this year, Joni and Friends, through the International Disability Center, offers a wide array of life-affirming ministries to people with disabilities around the world, including international radio and television programs filled with inspirational stories. Wheels for the World sees thousands of individuals receive wheelchairs and the life-giving message of the Gospel. Every year families affected by disability learn that they are not alone when they attend Family Retreats across the U.S. and now around the world.
	� 30 � NOTE TO EDITORS: For more information about the Joni and Friends Christian Institute on Disability or to arrange an interview with or Joni Eareckson Tada or CID representatives, please contact Melany Ethridge of A. Larry Ross Communications at 972.267.1111 or melany@.... more information is available in our online newsroom: www.JoniAndFriendsNews.com
	�2009, a larry ross communications all rights reserved

1 of 1 File(s)

CID release_v3.doc

#22438

From: nick sierra <nicksierra@...>
Date: Thu Oct 29, 2009 2:50 pm
Subject: Re: Re: : Fear of being alone

nicksierra

Offline

its just a baby monitor my pager is similar to it but it only works within house and garden
--- On Tue, 10/27/09, conniet37 <conniet37@...> wrote:

From: conniet37 <conniet37@...>
Subject: [MD-List] Re: : Fear of being alone
To: MD-List@yahoogroups.com
Date: Tuesday, October 27, 2009, 5:08 PM

hi nick, is the intercom u have like the emergency response system?

--- In MD-List@yahoogroups .com, "nick" <nicksierra@ ...> wrote:
>
> hi i am on vent at night i dont like being on my own unable to call for help just incase things go wrong ive got an intercom and a pager which do make me feel more at ease
>

#22437

From: Estev�o Augusto <esaugusto@...>
Date: Wed Oct 28, 2009 10:51 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

estevaosa

Offline

You're welcome .

2009/10/28 <Msna1980@...>

�

Thank you so much

�

�

-----Original Message-----
From: Estev�o Augusto <esaugusto@...>
To: MD-List@yahoogroups.com
Sent: Wed, Oct 28, 2009 2:22 pm
Subject: Re: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

�

i use Respironics' ComfortLite 2 with Direct Seal nasal interface.

2009/10/27 <Msna1980@...>
>
>
>
> Thank you for the information.
>
> Does anyone use non invasive volume ventilation during the day? Can you reccommend any of the nasal pillow masks or another type of mask that does not cover the eye(eyeglass wearer) and still allows for speaking and drinking liquids? Looking for a mask that is comfortable.
>
> Thanks for your help
>
> Matt and Maureen
>
>
>
> -----Original Message-----
> From: Estev�o Augusto <esaugusto@...>
> To: dmdpioneers@yahoogroups.com
> Cc: md-list@yahoogroups.com; dmdsupport@yahoogroups.com
> Sent: Tue, Oct 27, 2009 2:55 pm
> Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
>
>
> 2 other Drs.: Fabio Solano and Fabian Lara
>
> 2009/10/27 Estev�o Augusto <esaugusto@...>
>>
>> my pleasure.
>>
>> 2009/10/27 Jason Gallagher <elevatorsout@...>
>>>
>>>
>>> Cool. Thanks for doing the research.
>>> -- Jason
>>>
>>> --^--^--^--^--^--^--^--^--^--^--^
>>> Jason Gallagher
>>> 913-735-5341
>>>
>>> "The only real mistake is the one from which we learn nothing." -John Powell
>>>
>>> 2009/10/27 Estev�o Augusto <esaugusto@...>
>>>
>>> >
>>> >
>>> > i found it's being done at Stem Cell Institute
>>> > http://www.cellmedicine.com/in Costa Rica or Panama by Dr. Neil H.
>>> > Riordan.
>>> > they say they have now treated 4 people with DMD and have all shown some
>>> > improvement...
>>> >
>>> > 2009/10/22 Estev�o Augusto <esaugusto@... <esaugusto%40gmail.com>>
>>> >
>>> >
>>> > > full article at
>>> > >
>>> > http://www.esnips.com/doc/2ae6f502-d1ee-4c46-a441-25339f7d444a/MSC-stem-cell-treatment
>>> > >
>>> > > 2009/10/21 Tyler Smith <theangrywaffles@...<theangrywaffles%40yahoo.com>
>>> > >
>>> > >
>>> > >>
>>> > >>
>>> > >> I'd assume it would have been done in one of the two foreign hospitals
>>> > >> mentioned here:
>>> > >>
>>> > >> Institute for Cellular Medicine, Panama City, Panama
>>> > >> Hospital CIMA, San Jose, Costa Rica
>>> > >>
>>> > >> I would think the research was done in the American universities while
>>> > >> consulting those doctors listed, with the actual procedures done in
>>> > those
>>> > >> two hospitals. That's only if I had to guess.
>>> > >>
>>> > >> I wish I knew more, too.
>>> > >>
>>> > >> - Tyler
>>> > >>
>>> > >> ________________________________
>>> > >> From: Jason Gallagher <elevatorsout@...<elevatorsout%40gmail.com><elevatorsout%
>>> > 40gmail.com>>
>>> > >> To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com><dmdpioneers%
>>> > 40yahoogroups.com>
>>> > >> Sent: Wed, October 21, 2009 8:05:38 PM
>>> > >> Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
>>> > >>
>>> > >> Tyler,
>>> > >> That makes sense about the doctors correlating. I was just curious as to
>>> > >> the locality of the patient. Where did he receive the treatments? Was it
>>> > >> in the USA? I didn't think in the USA they allowed such types of trials
>>> > >> without lots of hoop jumping first. These are the questions I am
>>> > wondering
>>> > >> about.
>>> > >>
>>> > >> ---Jason
>>> > >>
>>> > >> --^--^--^--^ --^--^--^ --^--^--^ --^
>>> > >> Jason Gallagher
>>> > >> 913-735-5341
>>> > >>
>>> > >> Turn your stumbling blocks into stepping stones. -Anonymous
>>> > >>
>>> > >> On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@
>>> > yahoo.com
>>> > >> >wrote:
>>> > >>
>>> > >> >
>>> > >> >
>>> > >> > Each location correlates to the doctors listed. So for example...
>>> > >> >
>>> > >> > Thomas E. Ichim, Medistem Inc, San Diego, USA
>>> > >> > Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
>>> > >> >
>>> > >> > And so on.
>>> > >> >
>>> > >> > I also assume Estevao derived the article information from this link:
>>> > >> >
>>> > >> > http://sci.rutgers. edu/forum/ showthread. php?p=1111323
>>> > >> >
>>> > >> > It's not much more informative, however.
>>> > >> >
>>> > >> > - Tyler
>>> > >> >
>>> > >> >
>>> > >>
>>> > >> [Non-text portions of this message have been removed]
>>> > >>
>>> > >> [Non-text portions of this message have been removed]
>>> > >>
>>> > >>
>>> > >>
>>> > >
>>> > >
>>> > >
>>> > > --
>>> > > Estev�o Augusto
>>> > > http://filmescopio.blogspot.com/
>>> > > http://livro-esoterico.blogspot.com/
>>> > > http://distrofico.blogspot.com/
>>> > >
>>> >
>>> > --
>>> > Estev�o Augusto
>>> > http://filmescopio.blogspot.com/
>>> > http://livro-esoterico.blogspot.com/
>>> > http://distrofico.blogspot.com/
>>> >
>>> > [Non-text portions of this message have been removed]
>>> >
>>> >
>>> >
>>>
>>> [Non-text portions of this message have been removed]
>>>
>>
>>
>>
>> --
>> Estev�o Augusto
>> http://filmescopio.blogspot.com/
>> http://livro-esoterico.blogspot.com/
>> http://distrofico.blogspot.com/
>
>
>
> --
> Estev�o Augusto
> http://filmescopio.blogspot.com/
> http://livro-esoterico.blogspot.com/
> http://distrofico.blogspot.com/
>
>

--
Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

--
Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

#22436

From: Estev�o Augusto <esaugusto@...>
Date: Wed Oct 28, 2009 10:50 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

estevaosa

Offline

he did the experiment in he's friend's son.

2009/10/28 S & T Riley <tsriley@...>

�

Both of the studies Bill posted links to are legitimate.

�

The case studies published by N. Riordan appear to be shams. I strongly suspect he is a charlatan. This ALS forum had him figured out three years ago: http://www.alsforums.com/forum/people-als-pals/1273-does-anyone-know-stem-cell-research.html

�

If he was legit, no one would have to advise him to publicize his results in a peer-reviewed journal; it would be the only was he would consider publishing his work. If the results were real, it would be a big news story, with all MD-related organizations informing their members of the breakthrough.

�

Tina

�

�

----- Original Message -----

From: bill andrews

To: MD-List@yahoogroups.com

Sent: Wednesday, October 28, 2009 12:05 PM

Subject: Re: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

�

http://www.sciencedaily.com/releases/2009/06/090604124025.htm

--- On Wed, 10/28/09, sridhar ramachandra <smramachandra@...> wrote:

From: sridhar ramachandra <smramachandra@...>
Subject: Re: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
To: MD-List@yahoogroups.com
Date: Wednesday, October 28, 2009, 11:30 AM

�

I am willing to beleve the claim. But, if they have really done this as claimed, it would be ground breaking and deserves acclaim. These people (authors)�must get this in the proper Medical Journals so that a wider body of qualified medical personnel review this and confirm the claim. Persons sufferng from DMD need urgently. It is not found PubMed where all such information is published and reviewed.�PubMed does not contain this. I had this checked by two friends and they have come up blank.

Ramachandra

--- On Tue, 10/27/09, Estev�o Augusto <esaugusto@gmail. com> wrote:

From: Estev�o Augusto <esaugusto@gmail. com>
Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
To: dmdpioneers@ yahoogroups. com, dmdsupport@yahoogro ups.com, md-list@yahoogroups .com
Date: Tuesday, October 27, 2009, 5:36 PM

�

i found it's being done at Stem Cell Institute http://www.cellmedi cine.com/ in Costa Rica or Panama by Dr. Neil H. Riordan.
they say they have now treated 4 people with DMD and have all shown some improvement. ..

2009/10/22 Estev�o Augusto <esaugusto@gmail. com>

full article at http://www.esnips. com/doc/2ae6f502 -d1ee-4c46- a441-25339f7d444 a/MSC-stem- cell-treatment

2009/10/21 Tyler Smith <theangrywaffles@ yahoo.com>

�

I'd assume it would have been done in one of the two foreign hospitals mentioned here:

Institute for Cellular Medicine, Panama City, Panama
Hospital CIMA, San Jose, Costa Rica

I would think the research was done in the American universities while consulting those doctors listed, with the actual procedures done in those two hospitals. That's only if I had to guess.

I wish I knew more, too.

- Tyler

____________ _________ _________ __
From: Jason Gallagher <elevatorsout@ gmail.com>
To: dmdpioneers@ yahoogroups. com
Sent: Wed, October 21, 2009 8:05:38 PM
Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

Tyler,
That makes sense about the doctors correlating. I was just curious as to
the locality of the patient. Where did he receive the treatments? Was it
in the USA? I didn't think in the USA they allowed such types of trials
without lots of hoop jumping first. These are the questions I am wondering
about.

---Jason

--^--^--^--^ --^--^--^ --^--^--^ --^
Jason Gallagher
913-735-5341

Turn your stumbling blocks into stepping stones. -Anonymous

On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@ yahoo.com>wrote:

>
>
> Each location correlates to the doctors listed. So for example...
>
> Thomas E. Ichim, Medistem Inc, San Diego, USA
> Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
>
> And so on.
>
> I also assume Estevao derived the article information from this link:
>
> http://sci.rutgers. edu/forum/ showthread. php?p=1111323
>
> It's not much more informative, however.
>
> - Tyler
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

--
Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

#22435

From: Estev�o Augusto <esaugusto@...>
Date: Wed Oct 28, 2009 10:42 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

estevaosa

Offline

they said it'll be plubised at PubMed in 2 weeks.

2009/10/28 sridhar ramachandra <smramachandra@...>

�

I am willing to beleve the claim. But, if they have really done this as claimed, it would be ground breaking and deserves acclaim. These people (authors)�must get this in the proper Medical Journals so that a wider body of qualified medical personnel review this and confirm the claim. Persons sufferng from DMD need urgently. It is not found PubMed where all such information is published and reviewed.�PubMed does not contain this. I had this checked by two friends and they have come up blank.

Ramachandra

--- On Tue, 10/27/09, Estev�o Augusto <esaugusto@...> wrote:

From: Estev�o Augusto <esaugusto@...>
Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

To: dmdpioneers@yahoogroups.com, dmdsupport@yahoogroups.com, md-list@yahoogroups.com

Date: Tuesday, October 27, 2009, 5:36 PM

�

i found it's being done at Stem Cell Institute http://www.cellmedi cine.com/ in Costa Rica or Panama by Dr. Neil H. Riordan.

they say they have now treated 4 people with DMD and have all shown some improvement. ..

2009/10/22 Estev�o Augusto <esaugusto@gmail. com>

full article at http://www.esnips. com/doc/2ae6f502 -d1ee-4c46- a441-25339f7d444 a/MSC-stem- cell-treatment

2009/10/21 Tyler Smith <theangrywaffles@ yahoo.com>

�

I'd assume it would have been done in one of the two foreign hospitals mentioned here:

Institute for Cellular Medicine, Panama City, Panama
Hospital CIMA, San Jose, Costa Rica

I would think the research was done in the American universities while consulting those doctors listed, with the actual procedures done in those two hospitals. That's only if I had to guess.

I wish I knew more, too.

- Tyler

____________ _________ _________ __
From: Jason Gallagher <elevatorsout@ gmail.com>

To: dmdpioneers@ yahoogroups. com

Sent: Wed, October 21, 2009 8:05:38 PM
Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

Tyler,
That makes sense about the doctors correlating. I was just curious as to
the locality of the patient. Where did he receive the treatments? Was it
in the USA? I didn't think in the USA they allowed such types of trials
without lots of hoop jumping first. These are the questions I am wondering
about.

---Jason

--^--^--^--^ --^--^--^ --^--^--^ --^
Jason Gallagher
913-735-5341

Turn your stumbling blocks into stepping stones. -Anonymous

On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@ yahoo.com>wrote:

>
>
> Each location correlates to the doctors listed. So for example...
>
> Thomas E. Ichim, Medistem Inc, San Diego, USA
> Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
>
> And so on.
>
> I also assume Estevao derived the article information from this link:
>
> http://sci.rutgers. edu/forum/ showthread. php?p=1111323
>
> It's not much more informative, however.
>
> - Tyler
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

--
Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

#22434

From: Msna1980@...
Date: Wed Oct 28, 2009 10:38 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

Msna1980@...

Thank you so much

-----Original Message-----
From: Estevão Augusto <esaugusto@...>
To: MD-List@yahoogroups.com
Sent: Wed, Oct 28, 2009 2:22 pm
Subject: Re: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

i use Respironics' ComfortLite 2 with Direct Seal nasal interface.

2009/10/27 <Msna1980@aol.com>
>
>
>
> Thank you for the information.
>
> Does anyone use non invasive volume ventilation during the day? Can you reccommend any of the nasal pillow masks or another type of mask that does not cover the eye(eyeglass wearer) and still allows for speaking and drinking liquids? Looking for a mask that is comfortable.
>
> Thanks for your help
>
> Matt and Maureen
>
>
>
> -----Original Message-----
> From: Estevão Augusto <esaugusto@gmail.com>
> To: dmdpioneers@yahoogroups.com
> Cc: md-list@yahoogroups.com; dmdsupport@yahoogroups.com
> Sent: Tue, Oct 27, 2009 2:55 pm
> Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
>
>
> 2 other Drs.: Fabio Solano and Fabian Lara
>
> 2009/10/27 Estevão Augusto <esaugusto@gmail.com>
>>
>> my pleasure.
>>
>> 2009/10/27 Jason Gallagher <elevatorsout@gmail.com>
>>>
>>>
>>> Cool. Thanks for doing the research.
>>> -- Jason
>>>
>>> --^--^--^--^--^--^--^--^--^--^--^
>>> Jason Gallagher
>>> 913-735-5341
>>>
>>> "The only real mistake is the one from which we learn nothing." -John Powell
>>>
>>> 2009/10/27 Estevão Augusto <esaugusto@gmail.com>
>>>
>>> >
>>> >
>>> > i found it's being done at Stem Cell Institute
>>> > http://www.cellmedicine.com/in Costa Rica or Panama by Dr. Neil H.
>>> > Riordan.
>>> > they say they have now treated 4 people with DMD and have all shown some
>>> > improvement...
>>> >
>>> > 2009/10/22 Estevão Augusto <esaugusto@gmail.com <esaugusto%40gmail.com>>
>>> >
>>> >
>>> > > full article at
>>> > >
>>> > http://www.esnips.com/doc/2ae6f502-d1ee-4c46-a441-25339f7d444a/MSC-stem-cell-treatment
>>> > >
>>> > > 2009/10/21 Tyler Smith <theangrywaffles@yahoo.com<theangrywaffles%40yahoo.com>
>>> > >
>>> > >
>>> > >>
>>> > >>
>>> > >> I'd assume it would have been done in one of the two foreign hospitals
>>> > >> mentioned here:
>>> > >>
>>> > >> Institute for Cellular Medicine, Panama City, Panama
>>> > >> Hospital CIMA, San Jose, Costa Rica
>>> > >>
>>> > >> I would think the research was done in the American universities while
>>> > >> consulting those doctors listed, with the actual procedures done in
>>> > those
>>> > >> two hospitals. That's only if I had to guess.
>>> > >>
>>> > >> I wish I knew more, too.
>>> > >>
>>> > >> - Tyler
>>> > >>
>>> > >> ________________________________
>>> > >> From: Jason Gallagher <elevatorsout@gmail.com<elevatorsout%40gmail.com><elevatorsout%
>>> > 40gmail.com>>
>>> > >> To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com><dmdpioneers%
>>> > 40yahoogroups.com>
>>> > >> Sent: Wed, October 21, 2009 8:05:38 PM
>>> > >> Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
>>> > >>
>>> > >> Tyler,
>>> > >> That makes sense about the doctors correlating. I was just curious as to
>>> > >> the locality of the patient. Where did he receive the treatments? Was it
>>> > >> in the USA? I didn't think in the USA they allowed such types of trials
>>> > >> without lots of hoop jumping first. These are the questions I am
>>> > wondering
>>> > >> about.
>>> > >>
>>> > >> ---Jason
>>> > >>
>>> > >> --^--^--^--^ --^--^--^ --^--^--^ --^
>>> > >> Jason Gallagher
>>> > >> 913-735-5341
>>> > >>
>>> > >> Turn your stumbling blocks into stepping stones. -Anonymous
>>> > >>
>>> > >> On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@
>>> > yahoo.com
>>> > >> >wrote:
>>> > >>
>>> > >> >
>>> > >> >
>>> > >> > Each location correlates to the doctors listed. So for example...
>>> > >> >
>>> > >> > Thomas E. Ichim, Medistem Inc, San Diego, USA
>>> > >> > Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
>>> > >> >
>>> > >> > And so on.
>>> > >> >
>>> > >> > I also assume Estevao derived the article information from this link:
>>> > >> >
>>> > >> > http://sci.rutgers. edu/forum/ showthread. php?p=1111323
>>> > >> >
>>> > >> > It's not much more informative, however.
>>> > >> >
>>> > >> > - Tyler
>>> > >> >
>>> > >> >
>>> > >>
>>> > >> [Non-text portions of this message have been removed]
>>> > >>
>>> > >> [Non-text portions of this message have been removed]
>>> > >>
>>> > >>
>>> > >>
>>> > >
>>> > >
>>> > >
>>> > > --
>>> > > Estevão Augusto
>>> > > http://filmescopio.blogspot.com/
>>> > > http://livro-esoterico.blogspot.com/
>>> > > http://distrofico.blogspot.com/
>>> > >
>>> >
>>> > --
>>> > Estevão Augusto
>>> > http://filmescopio.blogspot.com/
>>> > http://livro-esoterico.blogspot.com/
>>> > http://distrofico.blogspot.com/
>>> >
>>> > [Non-text portions of this message have been removed]
>>> >
>>> >
>>> >
>>>
>>> [Non-text portions of this message have been removed]
>>>
>>
>>
>>
>> --
>> Estevão Augusto
>> http://filmescopio.blogspot.com/
>> http://livro-esoterico.blogspot.com/
>> http://distrofico.blogspot.com/
>
>
>
> --
> Estevão Augusto
> http://filmescopio.blogspot.com/
> http://livro-esoterico.blogspot.com/
> http://distrofico.blogspot.com/
>
>

--
Estevão Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

#22433

From: Estev�o Augusto <esaugusto@...>
Date: Wed Oct 28, 2009 10:22 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

estevaosa

Offline

i use Respironics' ComfortLite 2 with Direct Seal nasal interface.

2009/10/27 <Msna1980@...>
>
>
>
> Thank you for the information.
>
> Does anyone use non invasive volume ventilation during the day? Can you
reccommend any of the nasal pillow masks or another type of mask that does not
cover the eye(eyeglass wearer) and still allows for speaking and drinking
liquids? Looking for a mask that is comfortable.
>
> Thanks for your help
>
> Matt and Maureen
>
>
>
> -----Original Message-----
> From: Estev�o Augusto <esaugusto@...>
> To: dmdpioneers@yahoogroups.com
> Cc: md-list@yahoogroups.com; dmdsupport@yahoogroups.com
> Sent: Tue, Oct 27, 2009 2:55 pm
> Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
>
>
> 2 other Drs.: Fabio Solano and Fabian Lara
>
> 2009/10/27 Estev�o Augusto <esaugusto@...>
>>
>> my pleasure.
>>
>> 2009/10/27 Jason Gallagher <elevatorsout@...>
>>>
>>>
>>> Cool. Thanks for doing the research.
>>> -- Jason
>>>
>>> --^--^--^--^--^--^--^--^--^--^--^
>>> Jason Gallagher
>>> 913-735-5341
>>>
>>> "The only real mistake is the one from which we learn nothing." -John Powell
>>>
>>> 2009/10/27 Estev�o Augusto <esaugusto@...>
>>>
>>> >
>>> >
>>> > i found it's being done at Stem Cell Institute
>>> > http://www.cellmedicine.com/in Costa Rica or Panama by Dr. Neil H.
>>> > Riordan.
>>> > they say they have now treated 4 people with DMD and have all shown some
>>> > improvement...
>>> >
>>> > 2009/10/22 Estev�o Augusto <esaugusto@... <esaugusto%40gmail.com>>
>>> >
>>> >
>>> > > full article at
>>> > >
>>> >
http://www.esnips.com/doc/2ae6f502-d1ee-4c46-a441-25339f7d444a/MSC-stem-cell-tre\
atment
>>> > >
>>> > > 2009/10/21 Tyler Smith
<theangrywaffles@...<theangrywaffles%40yahoo.com>
>>> > >
>>> > >
>>> > >>
>>> > >>
>>> > >> I'd assume it would have been done in one of the two foreign hospitals
>>> > >> mentioned here:
>>> > >>
>>> > >> Institute for Cellular Medicine, Panama City, Panama
>>> > >> Hospital CIMA, San Jose, Costa Rica
>>> > >>
>>> > >> I would think the research was done in the American universities while
>>> > >> consulting those doctors listed, with the actual procedures done in
>>> > those
>>> > >> two hospitals. That's only if I had to guess.
>>> > >>
>>> > >> I wish I knew more, too.
>>> > >>
>>> > >> - Tyler
>>> > >>
>>> > >> ________________________________
>>> > >> From: Jason Gallagher
<elevatorsout@...<elevatorsout%40gmail.com><elevatorsout%
>>> > 40gmail.com>>
>>> > >> To: dmdpioneers@yahoogroups.com
<dmdpioneers%40yahoogroups.com><dmdpioneers%
>>> > 40yahoogroups.com>
>>> > >> Sent: Wed, October 21, 2009 8:05:38 PM
>>> > >> Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
>>> > >>
>>> > >> Tyler,
>>> > >> That makes sense about the doctors correlating. I was just curious as
to
>>> > >> the locality of the patient. Where did he receive the treatments? Was
it
>>> > >> in the USA? I didn't think in the USA they allowed such types of trials
>>> > >> without lots of hoop jumping first. These are the questions I am
>>> > wondering
>>> > >> about.
>>> > >>
>>> > >> ---Jason
>>> > >>
>>> > >> --^--^--^--^ --^--^--^ --^--^--^ --^
>>> > >> Jason Gallagher
>>> > >> 913-735-5341
>>> > >>
>>> > >> Turn your stumbling blocks into stepping stones. -Anonymous
>>> > >>
>>> > >> On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@
>>> > yahoo.com
>>> > >> >wrote:
>>> > >>
>>> > >> >
>>> > >> >
>>> > >> > Each location correlates to the doctors listed. So for example...
>>> > >> >
>>> > >> > Thomas E. Ichim, Medistem Inc, San Diego, USA
>>> > >> > Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
>>> > >> >
>>> > >> > And so on.
>>> > >> >
>>> > >> > I also assume Estevao derived the article information from this link:
>>> > >> >
>>> > >> > http://sci.rutgers. edu/forum/ showthread. php?p=1111323
>>> > >> >
>>> > >> > It's not much more informative, however.
>>> > >> >
>>> > >> > - Tyler
>>> > >> >
>>> > >> >
>>> > >>
>>> > >> [Non-text portions of this message have been removed]
>>> > >>
>>> > >> [Non-text portions of this message have been removed]
>>> > >>
>>> > >>
>>> > >>
>>> > >
>>> > >
>>> > >
>>> > > --
>>> > > Estev�o Augusto
>>> > > http://filmescopio.blogspot.com/
>>> > > http://livro-esoterico.blogspot.com/
>>> > > http://distrofico.blogspot.com/
>>> > >
>>> >
>>> > --
>>> > Estev�o Augusto
>>> > http://filmescopio.blogspot.com/
>>> > http://livro-esoterico.blogspot.com/
>>> > http://distrofico.blogspot.com/
>>> >
>>> > [Non-text portions of this message have been removed]
>>> >
>>> >
>>> >
>>>
>>> [Non-text portions of this message have been removed]
>>>
>>
>>
>>
>> --
>> Estev�o Augusto
>> http://filmescopio.blogspot.com/
>> http://livro-esoterico.blogspot.com/
>> http://distrofico.blogspot.com/
>
>
>
> --
> Estev�o Augusto
> http://filmescopio.blogspot.com/
> http://livro-esoterico.blogspot.com/
> http://distrofico.blogspot.com/
>
>


--
Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

#22432

From: "Michael Keen" <mkeen@...>
Date: Wed Oct 28, 2009 7:55 pm
Subject: finally a new blog post

devldude23

Offline

http://spritroller.blogspot.com/2009/10/doggy-drama.html

Michael Keen,
Spirit Roller Ministries-Director
Commissioned Minister
Joni and Friends Affiliate
www.spiritrollerministries.org
Phone:   804-477-1802
Cell:      540-448-3824
Fax:       540-932-8933

"I can do all things through Christ who strengthens me."Philippians 4:13

#22431

From: "S & T Riley" <tsriley@...>
Date: Wed Oct 28, 2009 6:14 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

bry_dmd

Offline

Both of the studies Bill posted links to are legitimate.

The case studies published by N. Riordan appear to be shams. I strongly suspect he is a charlatan. This ALS forum had him figured out three years ago: http://www.alsforums.com/forum/people-als-pals/1273-does-anyone-know-stem-cell-research.html

If he was legit, no one would have to advise him to publicize his results in a peer-reviewed journal; it would be the only was he would consider publishing his work. If the results were real, it would be a big news story, with all MD-related organizations informing their members of the breakthrough.

Tina

----- Original Message -----

From: bill andrews

To: MD-List@yahoogroups.com

Sent: Wednesday, October 28, 2009 12:05 PM

Subject: Re: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

http://www.sciencedaily.com/releases/2009/06/090604124025.htm

--- On Wed, 10/28/09, sridhar ramachandra <smramachandra@yahoo.com> wrote:

From: sridhar ramachandra <smramachandra@yahoo.com>
Subject: Re: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
To: MD-List@yahoogroups.com
Date: Wednesday, October 28, 2009, 11:30 AM

I am willing to beleve the claim. But, if they have really done this as claimed, it would be ground breaking and deserves acclaim. These people (authors) must get this in the proper Medical Journals so that a wider body of qualified medical personnel review this and confirm the claim. Persons sufferng from DMD need urgently. It is not found PubMed where all such information is published and reviewed. PubMed does not contain this. I had this checked by two friends and they have come up blank.

Ramachandra

--- On Tue, 10/27/09, Estev�o Augusto <esaugusto@gmail. com> wrote:

From: Estev�o Augusto <esaugusto@gmail. com>
Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
To: dmdpioneers@ yahoogroups. com, dmdsupport@yahoogro ups.com, md-list@yahoogroups .com
Date: Tuesday, October 27, 2009, 5:36 PM

i found it's being done at Stem Cell Institute http://www.cellmedi cine.com/ in Costa Rica or Panama by Dr. Neil H. Riordan.
they say they have now treated 4 people with DMD and have all shown some improvement. ..

2009/10/22 Estev�o Augusto <esaugusto@gmail. com>

full article at http://www.esnips. com/doc/2ae6f502 -d1ee-4c46- a441-25339f7d444 a/MSC-stem- cell-treatment

2009/10/21 Tyler Smith <theangrywaffles@ yahoo.com>

I'd assume it would have been done in one of the two foreign hospitals mentioned here:

Institute for Cellular Medicine, Panama City, Panama
Hospital CIMA, San Jose, Costa Rica

I would think the research was done in the American universities while consulting those doctors listed, with the actual procedures done in those two hospitals. That's only if I had to guess.

I wish I knew more, too.

- Tyler

____________ _________ _________ __
From: Jason Gallagher <elevatorsout@ gmail.com>
To: dmdpioneers@ yahoogroups. com
Sent: Wed, October 21, 2009 8:05:38 PM
Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

Tyler,
That makes sense about the doctors correlating. I was just curious as to
the locality of the patient. Where did he receive the treatments? Was it
in the USA? I didn't think in the USA they allowed such types of trials
without lots of hoop jumping first. These are the questions I am wondering
about.

---Jason

--^--^--^--^ --^--^--^ --^--^--^ --^
Jason Gallagher
913-735-5341

Turn your stumbling blocks into stepping stones. -Anonymous

On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@ yahoo.com>wrote:

>
>
> Each location correlates to the doctors listed. So for example...
>
> Thomas E. Ichim, Medistem Inc, San Diego, USA
> Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
>
> And so on.
>
> I also assume Estevao derived the article information from this link:
>
> http://sci.rutgers. edu/forum/ showthread. php?p=1111323
>
> It's not much more informative, however.
>
> - Tyler
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

#22430

From: "Diana Howe" <diana.howe@...>
Date: Wed Oct 28, 2009 5:46 pm
Subject: RE: clogged j tube

diana.howe@...

Yeah we flush every 2 to 3 hours. It was the hospital putting meds through with a big syringe I think that got it clogged. I was told to use small syringes because there is more pressure but nurses don’t listen. Anyway Christopher is now about 70 to 75 pounds. It was a new tube and they had such a hard time putting it in I really didn’t want to got through that again and I knew he wasn’t strong enough either. I am just glad I got it. Yeah!

Diana

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of momdmd
Sent: Monday, October 26, 2009 22:12
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] clogged j tube

oh my gosh we are having the same problem. I had to call the agency and they sent one of the nurses out with the same problem. Luckily it was in the extention and she tried the coke which worked. Also, they tried a pipecleaner or would have. I was thinking of the brush that came with the trach cleaning kit. I think I have to flush it more. How often do you usually flush yours? Ours was so awful and I was embarassed that I had tried tylonal (liquid) and it went back up towards the feeding bag lol We were worried we'd have to send him to ER. I have no idea what he weighs now, he was 72 when he got released he said.

Terri

The best and most beautiful things in the world cannot be seen or even touched.
They must be felt with the heart.
Helen Keller
http://www.skywriting.net/quotes/

----- Original Message -----

From: Diana Howe

To: MD-List@yahoogroups.com

Sent: Sunday, October 25, 2009 3:59 PM

Subject: [MD-List] clogged j tube

Hi I just brought my son home from ICU after getting an infection of some sort. Anyway he had just got a new feeding before he got sick. Anyway I went to give him a feed only to find out that the tube is clogged. I have tried putting coke through to break through the clog with no results. I really don’t think he is strong enough at this point to got back to the hospital for a new tube. It would take way too much out of him. He cant’ even be in his chair for 30 mins with out wanting back in bed. He is down to 75 pounds and still recovering. But with this happening it just messes everything out. Does anybody have an idea on how to unclog a mickey J tube? I really don’t want to put him through any more.

Diana

#22429

From: bill andrews <billgepump@...>
Date: Wed Oct 28, 2009 4:05 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

billgepump

Offline

http://www.sciencedaily.com/releases/2009/06/090604124025.htm

--- On Wed, 10/28/09, sridhar ramachandra <smramachandra@...> wrote:

From: sridhar ramachandra <smramachandra@...>
Subject: Re: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
To: MD-List@yahoogroups.com
Date: Wednesday, October 28, 2009, 11:30 AM

I am willing to beleve the claim. But, if they have really done this as claimed, it would be ground breaking and deserves acclaim. These people (authors) must get this in the proper Medical Journals so that a wider body of qualified medical personnel review this and confirm the claim. Persons sufferng from DMD need urgently. It is not found PubMed where all such information is published and reviewed. PubMed does not contain this. I had this checked by two friends and they have come up blank.

Ramachandra

--- On Tue, 10/27/09, Estev�o Augusto <esaugusto@gmail. com> wrote:

From: Estev�o Augusto <esaugusto@gmail. com>
Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
To: dmdpioneers@ yahoogroups. com, dmdsupport@yahoogro ups.com, md-list@yahoogroups .com
Date: Tuesday, October 27, 2009, 5:36 PM

i found it's being done at Stem Cell Institute http://www.cellmedi cine.com/ in Costa Rica or Panama by Dr. Neil H. Riordan.
they say they have now treated 4 people with DMD and have all shown some improvement. ..

2009/10/22 Estev�o Augusto <esaugusto@gmail. com>

full article at http://www.esnips. com/doc/2ae6f502 -d1ee-4c46- a441-25339f7d444 a/MSC-stem- cell-treatment

2009/10/21 Tyler Smith <theangrywaffles@ yahoo.com>

I'd assume it would have been done in one of the two foreign hospitals mentioned here:

Institute for Cellular Medicine, Panama City, Panama
Hospital CIMA, San Jose, Costa Rica

I would think the research was done in the American universities while consulting those doctors listed, with the actual procedures done in those two hospitals. That's only if I had to guess.

I wish I knew more, too.

- Tyler

____________ _________ _________ __
From: Jason Gallagher <elevatorsout@ gmail.com>
To: dmdpioneers@ yahoogroups. com
Sent: Wed, October 21, 2009 8:05:38 PM
Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

Tyler,
That makes sense about the doctors correlating. I was just curious as to
the locality of the patient. Where did he receive the treatments? Was it
in the USA? I didn't think in the USA they allowed such types of trials
without lots of hoop jumping first. These are the questions I am wondering
about.

---Jason

--^--^--^--^ --^--^--^ --^--^--^ --^
Jason Gallagher
913-735-5341

Turn your stumbling blocks into stepping stones. -Anonymous

On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@ yahoo.com>wrote:

>
>
> Each location correlates to the doctors listed. So for example...
>
> Thomas E. Ichim, Medistem Inc, San Diego, USA
> Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
>
> And so on.
>
> I also assume Estevao derived the article information from this link:
>
> http://sci.rutgers. edu/forum/ showthread. php?p=1111323
>
> It's not much more informative, however.
>
> - Tyler
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

#22428

From: bill andrews <billgepump@...>
Date: Wed Oct 28, 2009 3:43 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

billgepump

Offline

http://www.sciencedaily.com/releases/2007/12/071212202004.htm

--- On Wed, 10/28/09, sridhar ramachandra <smramachandra@...> wrote:

From: sridhar ramachandra <smramachandra@...>
Subject: Re: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
To: MD-List@yahoogroups.com
Date: Wednesday, October 28, 2009, 11:30 AM

I am willing to beleve the claim. But, if they have really done this as claimed, it would be ground breaking and deserves acclaim. These people (authors) must get this in the proper Medical Journals so that a wider body of qualified medical personnel review this and confirm the claim. Persons sufferng from DMD need urgently. It is not found PubMed where all such information is published and reviewed. PubMed does not contain this. I had this checked by two friends and they have come up blank.

Ramachandra

--- On Tue, 10/27/09, Estev�o Augusto <esaugusto@gmail. com> wrote:

From: Estev�o Augusto <esaugusto@gmail. com>
Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
To: dmdpioneers@ yahoogroups. com, dmdsupport@yahoogro ups.com, md-list@yahoogroups .com
Date: Tuesday, October 27, 2009, 5:36 PM

i found it's being done at Stem Cell Institute http://www.cellmedi cine.com/ in Costa Rica or Panama by Dr. Neil H. Riordan.
they say they have now treated 4 people with DMD and have all shown some improvement. ..

2009/10/22 Estev�o Augusto <esaugusto@gmail. com>

full article at http://www.esnips. com/doc/2ae6f502 -d1ee-4c46- a441-25339f7d444 a/MSC-stem- cell-treatment

2009/10/21 Tyler Smith <theangrywaffles@ yahoo.com>

I'd assume it would have been done in one of the two foreign hospitals mentioned here:

Institute for Cellular Medicine, Panama City, Panama
Hospital CIMA, San Jose, Costa Rica

I would think the research was done in the American universities while consulting those doctors listed, with the actual procedures done in those two hospitals. That's only if I had to guess.

I wish I knew more, too.

- Tyler

____________ _________ _________ __
From: Jason Gallagher <elevatorsout@ gmail.com>
To: dmdpioneers@ yahoogroups. com
Sent: Wed, October 21, 2009 8:05:38 PM
Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

Tyler,
That makes sense about the doctors correlating. I was just curious as to
the locality of the patient. Where did he receive the treatments? Was it
in the USA? I didn't think in the USA they allowed such types of trials
without lots of hoop jumping first. These are the questions I am wondering
about.

---Jason

--^--^--^--^ --^--^--^ --^--^--^ --^
Jason Gallagher
913-735-5341

Turn your stumbling blocks into stepping stones. -Anonymous

On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@ yahoo.com>wrote:

>
>
> Each location correlates to the doctors listed. So for example...
>
> Thomas E. Ichim, Medistem Inc, San Diego, USA
> Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
>
> And so on.
>
> I also assume Estevao derived the article information from this link:
>
> http://sci.rutgers. edu/forum/ showthread. php?p=1111323
>
> It's not much more informative, however.
>
> - Tyler
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

#22427

From: sridhar ramachandra <smramachandra@...>
Date: Wed Oct 28, 2009 3:30 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

smramachandra

Offline

I am willing to beleve the claim. But, if they have really done this as claimed, it would be ground breaking and deserves acclaim. These people (authors) must get this in the proper Medical Journals so that a wider body of qualified medical personnel review this and confirm the claim. Persons sufferng from DMD need urgently. It is not found PubMed where all such information is published and reviewed. PubMed does not contain this. I had this checked by two friends and they have come up blank.

Ramachandra

--- On Tue, 10/27/09, Estev�o Augusto <esaugusto@...> wrote:

From: Estev�o Augusto <esaugusto@...>
Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
To: dmdpioneers@yahoogroups.com, dmdsupport@yahoogroups.com, md-list@yahoogroups.com
Date: Tuesday, October 27, 2009, 5:36 PM

i found it's being done at Stem Cell Institute http://www.cellmedi cine.com/ in Costa Rica or Panama by Dr. Neil H. Riordan.
they say they have now treated 4 people with DMD and have all shown some improvement. ..

2009/10/22 Estev�o Augusto <esaugusto@gmail. com>

full article at http://www.esnips. com/doc/2ae6f502 -d1ee-4c46- a441-25339f7d444 a/MSC-stem- cell-treatment

2009/10/21 Tyler Smith <theangrywaffles@ yahoo.com>

I'd assume it would have been done in one of the two foreign hospitals mentioned here:

Institute for Cellular Medicine, Panama City, Panama
Hospital CIMA, San Jose, Costa Rica

I would think the research was done in the American universities while consulting those doctors listed, with the actual procedures done in those two hospitals. That's only if I had to guess.

I wish I knew more, too.

- Tyler

____________ _________ _________ __
From: Jason Gallagher <elevatorsout@ gmail.com>
To: dmdpioneers@ yahoogroups. com
Sent: Wed, October 21, 2009 8:05:38 PM
Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

Tyler,
That makes sense about the doctors correlating. I was just curious as to
the locality of the patient. Where did he receive the treatments? Was it
in the USA? I didn't think in the USA they allowed such types of trials
without lots of hoop jumping first. These are the questions I am wondering
about.

---Jason

--^--^--^--^ --^--^--^ --^--^--^ --^
Jason Gallagher
913-735-5341

Turn your stumbling blocks into stepping stones. -Anonymous

On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@ yahoo.com>wrote:

>
>
> Each location correlates to the doctors listed. So for example...
>
> Thomas E. Ichim, Medistem Inc, San Diego, USA
> Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
>
> And so on.
>
> I also assume Estevao derived the article information from this link:
>
> http://sci.rutgers. edu/forum/ showthread. php?p=1111323
>
> It's not much more informative, however.
>
> - Tyler
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

--
Estev�o Augusto
http://filmescopio. blogspot. com/
http://livro- esoterico. blogspot. com/
http://distrofico. blogspot. com/

#22426

From: <stbrigid@...>
Date: Wed Oct 28, 2009 3:01 pm
Subject: Re: : Fear of being alone

reina_kelly

Offline

Sorry I have been busy and am late responding to this thread..

It breaks my heart that these vent patients have to suffer this. I have never left my son alone ..even in intensive care tho they tried to throw me out and said I didin't understand their rules..I have actually had some of the rules changed.

If the person on a vent does not have any nerological problems and can move and call for a nurse etc that is different. When you add in physical weakness then they cannot really help themselves and I have known deaths to occur before anyone could get to them.One case involved an alarm not going off on the vent , the boy was 18.

The primary reason they qualifiy for nurses etc is the fact that they could die with in a matter of minutes.

I am wondering if your son has any nursing care?

This is not paranoi but a very real fear.

Hope you can comfort him and let him know you are there ...Reina

----- Original Message -----

From: Adele

To: MD-List@yahoogroups.com

Sent: Tuesday, October 27, 2009 8:55 AM

Subject: RE: [MD-List] : Fear of being alone

Terri, Has any kind of anti depressant or anti anxiety been RX for him? Being on a vent can be quite scarry. You of all people should know what goes on just by reading some of the posts off the DMD pioneer list. This is a tough thing to get use to.

Adele

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of momdmd
Sent: Tuesday, October 27, 2009 12:40 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] : Fear of being alone

This is a very difficult question to ask, and it relates to an issue I noticed with Alex but never asked about. My kids have always been good and playing both alone and with each other, but all of the sudden Nathan seems to be scared of being alone. It has happened since he was in the hospital and on the vent. I know that he probably felt lonely when he was in the hospital, he probably wants to have company and I understand that but I think part of it is the fear that something will happen and no one will come. I can stay with him all the time, and I have a friend who is also staying with him, but we are BOTH getting burnt out and I am beginning to worry that this is not good for him. I know there are a lot of guys with vents and trachs who don't expect their parents to sit with them constantly. I know it is early, he hasn't been home for a long time but I don't know how to tell if he is developing a phobia and we are enabling it. Right now he is asleep and I am in the next room writing this email, and wondering if this is a good step for him, wondering if there isn't something else I can do to help him feel comfortable being alone, but mind you I am in the next room, and it doesn't mean I would never sit with him. Tonight Christian sat and watched tv with him. He has several times since Nathan got home, so I am wondering if this is also a good way to help him.

Terri

#22425

From: JoyceGlass@...
Date: Wed Oct 28, 2009 10:00 am
Subject: Fwd: FW: Wheelchair Selection and Purchase Experience Survey

JoyceGlass@...

ShortSurveyLaunchAnnt8Oct09.doc

From: stacy@...
To: stockerw@..., hbbdaryl@..., JoyceGlass@..., justinr74@..., gilberthrdng@..., aimeesworld915@..., dtrim803@...
Sent: 10/28/2009 9:30:25 A.M. Eastern Daylight Time
Subj: FW: Wheelchair Selection and Purchase Experience Survey

Hi all.

I am not one to forward emails. But this is very important. I hope this finds you all well. Please pass this along to others that you know will complete the survey. Your voices (“consumers” as the legislators refer to you) are louder and carry much more weight than any equipment suppliers’ ever will. I know many of you have friends within your circles that too would benefit from our legislators hearing this important feedback. I spend a great deal of time advocating for necessary changes when it comes to law making that affects the community that Advanced Medical Concepts serves. I hope that you will take the time to let your voices be heard. It really has made a difference lately. We need to keep the fight going, though.

Please read the message below from the CEO of the National Spinal Cord Injury Association then the attached Word Document, then please click on the link that will take you to the survey.

Kind regards

Stacy

Stacy C. Link, OTR/L, ATP

Advanced Medical Concepts

9H Gwynns Mill Ct

Owings Mills, MD 21117

(410)902-7900 Office Main

(410)753-1219 Office Direct

(410)753-1215 Direct Fax

From: Virginia.St.Walls@... [mailto:Virginia.St.Walls@...]
Sent: Tuesday, October 27, 2009 1:53 PM
To: paige@...
Subject: Fw: Wheelchair Selection and Purchase Experience Survey

FYI - In case you want to pass this along to anyone.

Ginger Walls, PT, MS, NCS, ATP
Regional Director, NRH/Regional Rehab at Irving Street,
NRH/Regional Rehab at Mitchellville;
NRH/Regional Rehab Neuro Program Specialist;
102 Irving St, NW
Washington, DC 20010
202-877-1564
202-877-1679 (fax)
virginia.st.walls@...

----- Forwarded by Virginia St Walls/NRH/MedStar on 10/27/2009 01:49 PM -----

Dear SCLC members and friends,

As many of your know, National Spinal Cord Injury Association (NSCIA) has been joined by several other national consumer organizations in a consumer-driven, industry-supported initiative to collect and analyze objective data useful in educating policy makers on the consumer’s need for certain high-end rehab items and services related to these items (fittings, home visits, etc.). It is our aim that results from the online survey at www.spinalcord.org/survey will be presented to policymakers on Capitol Hill and at CMS, in an effort to address the fact that Medicare has limited or no coverage and payment for many such items impedes consumers’ abilities to fully engage in their communities and realize their highest possible quality of life.

I know most of you already know this, but the survey is up and running and we’ve begun to promote it out our (NSCIA’s) members.

I am writing to ask you to please share this with other wheelchair users as broadly as possible, but especially with your own direct members or constituents so we can get the best possible representation in completed surveys.

The survey resides at http://www.surveyconsole.com/console/TakeSurvey?id=569379 but we have created a simple landing page with a URL that’s a little easier to remember.

Thanks for helping to get this survey out to your constituents.

K. Eric Larson
Executive Director / Chief Executive Officer
National Spinal Cord Injury Association
elarson@...
Voice: 847-997-2109
Fax: 866-387-2196

(See attached file: ShortSurveyLaunchAnnt8Oct09.doc)(See attached file: SurveyLaunchNewsRelease8Oct09.doc)

CONFIDENTIAL: The information contained in this communication, including its attachments may contain confidential information and is intended only for the individual (s) or entity (ies) to whom it is addressed . The information contained in this communication may also be protected by legal privilege , federal law or other applicable law. If you are not the intended recipient of this communication , you are hereby notified that any distribution, dissemination or duplication of this communication is strictly prohibited. If you have received this communication in error please immediately delete and destroy all copies of this message and please immediately notify us of the error by separate communication . Thank you.

1 of 1 File(s)

#22424

From: BracinKnee@...
Date: Wed Oct 28, 2009 3:32 am
Subject: Help with a Presentation on Assistive Technology

bshanson68

Offline

Hello All,
I know this is short notice but I need help from all of you who have children with special needs and/or severe disabilities. I’m a in a rehabilitation class, for my major, that focuses on assistive technology. I have to do a presentation to my class and would like to focus on educating my classmates and professor on fun activities for children with limited movement.
So my request is for photographs and videos (I’m not sure how I will incorporate them , since we don’t have internet access in the room, but I will figure it out) of your child using low-tech or high-tech recreational devices. This can be, but is not limited to, board games, adaptive sports, switch toys, computer games, toys that are off the shelf, art projects, anything and everything your child enjoys for playtime. If you find it easier for me to pull photos or videos from your websites, please send the exact location of the video or photograph. I need everything by November 3rd …
If you have any questions, please e-mail or message me directly. My e-mail address is tweetyroll88@... Thanks for your help!

MJ

MJ Purk
SMA type I+, 21 years old
"You must not let your life run in the ordinary way; do something that nobody else has done, something that will dazzle the world. Show that God's creative principle works in you." ~ Paramahansa Yogananda

Ask me about B4SMA – Blankets for SMA kids, Our-SMA-Angels websites, and Personalized Merchandise!

www.our-sma-angels.com/b4sma - B4SMA, My organization
www.our-sma-angels.com/Margaret - My website
www.cafepress.com/b4sma - My Shop

#22423

From: JoyceGlass@...
Date: Tue Oct 27, 2009 11:02 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

JoyceGlass@...

Respironics makes a mask called Simplicity. You can look it up on Respionics web site. It is a small mask that goes over the tip of the nose.

In a message dated 10/27/2009 8:07:53 P.M. Eastern Daylight Time, Msna1980@... writes:

Thank you for the information.

Does anyone use non invasive volume ventilation during the day? Can you reccommend any of the nasal pillow masks or another type of mask that does not cover the eye(eyeglass wearer) and still allows for speaking and drinking liquids? Looking for a mask that is comfortable.

Thanks for your help

Matt and Maureen

-----Original Message-----
From: Estev�o Augusto <esaugusto@gmail.com>
To: dmdpioneers@yahoogroups.com
Cc: md-list@yahoogroups.com; dmdsupport@yahoogroups.com
Sent: Tue, Oct 27, 2009 2:55 pm
Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

2 other Drs.: Fabio Solano and Fabian Lara

2009/10/27 Estev�o Augusto <esaugusto@gmail.com>

my pleasure.

2009/10/27 Jason Gallagher <elevatorsout@gmail.com>

Cool. Thanks for doing the research.
-- Jason

--^--^--^--^--^--^--^--^--^--^--^
Jason Gallagher
913-735-5341

"The only real mistake is the one from which we learn nothing." -John Powell

2009/10/27 Estev�o Augusto <esaugusto@gmail.com>

>
>
> i found it's being done at Stem Cell Institute
> http://www.cellmedicine.com/in Costa Rica or Panama by Dr. Neil H.
> Riordan.
> they say they have now treated 4 people with DMD and have all shown some
> improvement...
>
> 2009/10/22 Estev�o Augusto <esaugusto@gmail.com <esaugusto%40gmail.com>>

>
>
> > full article at
> >
> http://www.esnips.com/doc/2ae6f502-d1ee-4c46-a441-25339f7d444a/MSC-stem-cell-treatment
> >
> > 2009/10/21 Tyler Smith <theangrywaffles@yahoo.com<theangrywaffles%40yahoo.com>

> >
> >
> >>
> >>
> >> I'd assume it would have been done in one of the two foreign hospitals
> >> mentioned here:
> >>
> >> Institute for Cellular Medicine, Panama City, Panama
> >> Hospital CIMA, San Jose, Costa Rica
> >>
> >> I would think the research was done in the American universities while
> >> consulting those doctors listed, with the actual procedures done in
> those
> >> two hospitals. That's only if I had to guess.
> >>
> >> I wish I knew more, too.
> >>
> >> - Tyler
> >>
> >> ________________________________
> >> From: Jason Gallagher <elevatorsout@gmail.com<elevatorsout%40gmail.com><elevatorsout%
> 40gmail.com>>
> >> To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com><dmdpioneers%
> 40yahoogroups.com>

> >> Sent: Wed, October 21, 2009 8:05:38 PM
> >> Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
> >>
> >> Tyler,
> >> That makes sense about the doctors correlating. I was just curious as to
> >> the locality of the patient. Where did he receive the treatments? Was it
> >> in the USA? I didn't think in the USA they allowed such types of trials
> >> without lots of hoop jumping first. These are the questions I am
> wondering
> >> about.
> >>
> >> ---Jason
> >>
> >> --^--^--^--^ --^--^--^ --^--^--^ --^
> >> Jason Gallagher
> >> 913-735-5341
> >>
> >> Turn your stumbling blocks into stepping stones. -Anonymous
> >>
> >> On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@
> yahoo.com
> >> >wrote:
> >>
> >> >
> >> >
> >> > Each location correlates to the doctors listed. So for example...
> >> >
> >> > Thomas E. Ichim, Medistem Inc, San Diego, USA
> >> > Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
> >> >
> >> > And so on.
> >> >
> >> > I also assume Estevao derived the article information from this link:
> >> >
> >> > http://sci.rutgers. edu/forum/ showthread. php?p=1111323
> >> >
> >> > It's not much more informative, however.
> >> >
> >> > - Tyler
> >> >
> >> >
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >>
> >>
> >
> >
> >
> > --

> > Estev�o Augusto
> > http://filmescopio.blogspot.com/
> > http://livro-esoterico.blogspot.com/
> > http://distrofico.blogspot.com/
> >
>
> --
> Estev�o Augusto
> http://filmescopio.blogspot.com/
> http://livro-esoterico.blogspot.com/
> http://distrofico.blogspot.com/
>

> [Non-text portions of this message have been removed]
>
>
>

[Non-text portions of this message have been removed]

--

Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

--
Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

#22422

From: Msna1980@...
Date: Tue Oct 27, 2009 11:59 pm
Subject: Re: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

Msna1980@...

Thank you for the information.

Does anyone use non invasive volume ventilation during the day? Can you reccommend any of the nasal pillow masks or another type of mask that does not cover the eye(eyeglass wearer) and still allows for speaking and drinking liquids? Looking for a mask that is comfortable.

Thanks for your help

Matt and Maureen

-----Original Message-----
From: Estevão Augusto <esaugusto@...>
To: dmdpioneers@yahoogroups.com
Cc: md-list@yahoogroups.com; dmdsupport@yahoogroups.com
Sent: Tue, Oct 27, 2009 2:55 pm
Subject: [MD-List] Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

2 other Drs.: Fabio Solano and Fabian Lara

2009/10/27 Estevão Augusto <esaugusto@gmail.com>

my pleasure.

2009/10/27 Jason Gallagher <elevatorsout@gmail.com>

Cool. Thanks for doing the research.
-- Jason

--^--^--^--^--^--^--^--^--^--^--^
Jason Gallagher
913-735-5341

"The only real mistake is the one from which we learn nothing." -John Powell

2009/10/27 Estevão Augusto <esaugusto@gmail.com>

>
>
> i found it's being done at Stem Cell Institute
> http://www.cellmedicine.com/in Costa Rica or Panama by Dr. Neil H.
> Riordan.
> they say they have now treated 4 people with DMD and have all shown some
> improvement...
>

> 2009/10/22 Estevão Augusto <esaugusto@gmail.com <esaugusto%40gmail.com>>

>
>
> > full article at
> >
> http://www.esnips.com/doc/2ae6f502-d1ee-4c46-a441-25339f7d444a/MSC-stem-cell-treatment
> >

> > 2009/10/21 Tyler Smith <theangrywaffles@yahoo.com<theangrywaffles%40yahoo.com>

> >
> >
> >>
> >>
> >> I'd assume it would have been done in one of the two foreign hospitals
> >> mentioned here:
> >>
> >> Institute for Cellular Medicine, Panama City, Panama
> >> Hospital CIMA, San Jose, Costa Rica
> >>
> >> I would think the research was done in the American universities while
> >> consulting those doctors listed, with the actual procedures done in
> those
> >> two hospitals. That's only if I had to guess.
> >>
> >> I wish I knew more, too.
> >>
> >> - Tyler
> >>
> >> ________________________________

> >> From: Jason Gallagher <elevatorsout@gmail.com<elevatorsout%40gmail.com><elevatorsout%
> 40gmail.com>>
> >> To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com><dmdpioneers%
> 40yahoogroups.com>

> >> Sent: Wed, October 21, 2009 8:05:38 PM
> >> Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
> >>
> >> Tyler,
> >> That makes sense about the doctors correlating. I was just curious as to
> >> the locality of the patient. Where did he receive the treatments? Was it
> >> in the USA? I didn't think in the USA they allowed such types of trials
> >> without lots of hoop jumping first. These are the questions I am
> wondering
> >> about.
> >>
> >> ---Jason
> >>
> >> --^--^--^--^ --^--^--^ --^--^--^ --^
> >> Jason Gallagher
> >> 913-735-5341
> >>
> >> Turn your stumbling blocks into stepping stones. -Anonymous
> >>
> >> On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@
> yahoo.com
> >> >wrote:
> >>
> >> >
> >> >
> >> > Each location correlates to the doctors listed. So for example...
> >> >
> >> > Thomas E. Ichim, Medistem Inc, San Diego, USA
> >> > Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
> >> >
> >> > And so on.
> >> >
> >> > I also assume Estevao derived the article information from this link:
> >> >
> >> > http://sci.rutgers. edu/forum/ showthread. php?p=1111323
> >> >
> >> > It's not much more informative, however.
> >> >
> >> > - Tyler
> >> >
> >> >
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >>
> >>
> >
> >
> >

> > --

> > Estevão Augusto
> > http://filmescopio.blogspot.com/
> > http://livro-esoterico.blogspot.com/
> > http://distrofico.blogspot.com/
> >
>
> --
> Estevão Augusto
> http://filmescopio.blogspot.com/
> http://livro-esoterico.blogspot.com/
> http://distrofico.blogspot.com/
>

> [Non-text portions of this message have been removed]
>
>
>

[Non-text portions of this message have been removed]

--

Estevão Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

--
Estevão Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

#22421

From: Estev�o Augusto <esaugusto@...>
Date: Tue Oct 27, 2009 10:55 pm
Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

estevaosa

Offline

2 other Drs.: Fabio Solano and Fabian Lara

2009/10/27 Estev�o Augusto <esaugusto@...>

my pleasure.

2009/10/27 Jason Gallagher <elevatorsout@...>

�

Cool. Thanks for doing the research.
-- Jason

--^--^--^--^--^--^--^--^--^--^--^
Jason Gallagher
913-735-5341

"The only real mistake is the one from which we learn nothing." -John Powell

2009/10/27 Estev�o Augusto <esaugusto@...>

>
>
> i found it's being done at Stem Cell Institute
> http://www.cellmedicine.com/in Costa Rica or Panama by Dr. Neil H.
> Riordan.
> they say they have now treated 4 people with DMD and have all shown some
> improvement...
>
> 2009/10/22 Estev�o Augusto <esaugusto@... <esaugusto%40gmail.com>>

>
>
> > full article at
> >
> http://www.esnips.com/doc/2ae6f502-d1ee-4c46-a441-25339f7d444a/MSC-stem-cell-treatment
> >
> > 2009/10/21 Tyler Smith <theangrywaffles@...<theangrywaffles%40yahoo.com>

> >
> >
> >>
> >>
> >> I'd assume it would have been done in one of the two foreign hospitals
> >> mentioned here:
> >>
> >> Institute for Cellular Medicine, Panama City, Panama
> >> Hospital CIMA, San Jose, Costa Rica
> >>
> >> I would think the research was done in the American universities while
> >> consulting those doctors listed, with the actual procedures done in
> those
> >> two hospitals. That's only if I had to guess.
> >>
> >> I wish I knew more, too.
> >>
> >> - Tyler
> >>
> >> ________________________________
> >> From: Jason Gallagher <elevatorsout@...<elevatorsout%40gmail.com><elevatorsout%
> 40gmail.com>>
> >> To: dmdpioneers@yahoogroups.com <dmdpioneers%40yahoogroups.com><dmdpioneers%
> 40yahoogroups.com>

> >> Sent: Wed, October 21, 2009 8:05:38 PM
> >> Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD
> >>
> >> Tyler,
> >> That makes sense about the doctors correlating. I was just curious as to
> >> the locality of the patient. Where did he receive the treatments? Was it
> >> in the USA? I didn't think in the USA they allowed such types of trials
> >> without lots of hoop jumping first. These are the questions I am
> wondering
> >> about.
> >>
> >> ---Jason
> >>
> >> --^--^--^--^ --^--^--^ --^--^--^ --^
> >> Jason Gallagher
> >> 913-735-5341
> >>
> >> Turn your stumbling blocks into stepping stones. -Anonymous
> >>
> >> On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@
> yahoo.com
> >> >wrote:
> >>
> >> >
> >> >
> >> > Each location correlates to the doctors listed. So for example...
> >> >
> >> > Thomas E. Ichim, Medistem Inc, San Diego, USA
> >> > Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
> >> >
> >> > And so on.
> >> >
> >> > I also assume Estevao derived the article information from this link:
> >> >
> >> > http://sci.rutgers. edu/forum/ showthread. php?p=1111323
> >> >
> >> > It's not much more informative, however.
> >> >
> >> > - Tyler
> >> >
> >> >
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >> [Non-text portions of this message have been removed]
> >>
> >>
> >>
> >
> >
> >
> > --

> > Estev�o Augusto
> > http://filmescopio.blogspot.com/
> > http://livro-esoterico.blogspot.com/
> > http://distrofico.blogspot.com/
> >
>
> --
> Estev�o Augusto
> http://filmescopio.blogspot.com/
> http://livro-esoterico.blogspot.com/
> http://distrofico.blogspot.com/
>
> [Non-text portions of this message have been removed]
>
>
>

[Non-text portions of this message have been removed]

--
Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

--
Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

#22420

From: Estev�o Augusto <esaugusto@...>
Date: Tue Oct 27, 2009 9:36 pm
Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

estevaosa

Offline

i found it's being done at Stem Cell Institute http://www.cellmedicine.com/ in Costa Rica or Panama by Dr. Neil H. Riordan.
they say they have now treated 4 people with DMD and have all shown some improvement...

2009/10/22 Estev�o Augusto <esaugusto@...>

full article at http://www.esnips.com/doc/2ae6f502-d1ee-4c46-a441-25339f7d444a/MSC-stem-cell-treatment

2009/10/21 Tyler Smith <theangrywaffles@...>

�

I'd assume it would have been done in one of the two foreign hospitals mentioned here:

Institute for Cellular Medicine, Panama City, Panama
Hospital CIMA, San Jose, Costa Rica

I would think the research was done in the American universities while consulting those doctors listed, with the actual procedures done in those two hospitals. That's only if I had to guess.

I wish I knew more, too.

- Tyler

________________________________
From: Jason Gallagher <elevatorsout@...>
To: dmdpioneers@yahoogroups.com
Sent: Wed, October 21, 2009 8:05:38 PM
Subject: Re: [DMD Pioneers] Case Report of Stem Cell Therapy for DMD

Tyler,
That makes sense about the doctors correlating. I was just curious as to
the locality of the patient. Where did he receive the treatments? Was it
in the USA? I didn't think in the USA they allowed such types of trials
without lots of hoop jumping first. These are the questions I am wondering
about.

---Jason

--^--^--^--^ --^--^--^ --^--^--^ --^
Jason Gallagher
913-735-5341

Turn your stumbling blocks into stepping stones. -Anonymous

On Wed, Oct 21, 2009 at 6:45 PM, Tyler Smith <theangrywaffles@ yahoo.com>wrote:

>
>
> Each location correlates to the doctors listed. So for example...
>
> Thomas E. Ichim, Medistem Inc, San Diego, USA
> Doru T. Alexandrescu, Georgetown Dermatology, Washington DC
>
> And so on.
>
> I also assume Estevao derived the article information from this link:
>
> http://sci.rutgers. edu/forum/ showthread. php?p=1111323
>
> It's not much more informative, however.
>
> - Tyler
>
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

--
Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

--
Estev�o Augusto
http://filmescopio.blogspot.com/
http://livro-esoterico.blogspot.com/
http://distrofico.blogspot.com/

#22419

From: "conniet37" <conniet37@...>
Date: Tue Oct 27, 2009 9:08 pm
Subject: Re: : Fear of being alone

conniet37

Offline

hi nick, is the intercom u have like the emergency response system?










--- In MD-List@yahoogroups.com, "nick" <nicksierra@...> wrote:
>
> hi i am on vent at night i dont like being on my own unable to call for help
just incase things go wrong ive got an intercom and a pager which do make me
feel more at ease
>

#22418

From: "nick" <nicksierra@...>
Date: Tue Oct 27, 2009 3:02 pm
Subject: Re: : Fear of being alone

nicksierra

Offline

hi i am on vent at night i dont like being on my own unable to call for help
just incase things go wrong ive got an intercom and a pager which do make me
feel more at ease

#22417

From: "The Barclays" <the4beez@...>
Date: Tue Oct 27, 2009 1:41 pm
Subject: RE: : Fear of being alone

the4beez2003

Offline

Sound like what Nathan is going through is pretty understandable. Our Ryan doesn't have a fear of being left alone in a room but refuses for obvious reasons of letting any caregiver out of his comfort zone. We use a wireless door bell system in the house. If Ryan is in bed, he has the doorbell and we can plug in the bell whereever we are going to be. He now lets me work in the garage, outside, have a hot tub, etc. because he knows I'll come running if he calls. Sometimes he wants to test it because it's not infallable.

Also sounds like some counselling would be in order to try and allay those fears. It might not be just the fear of being alone as much as simply wanting a sense of belonging and comfort. I can't tell. Its sounds like he is sleeping enough so if it was me I would try other solutions before seeking some medical intervention.

Good luck.

Owen

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of momdmd
Sent: Monday, October 26, 2009 9:40 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] : Fear of being alone

This is a very difficult question to ask, and it relates to an issue I noticed with Alex but never asked about. My kids have always been good and playing both alone and with each other, but all of the sudden Nathan seems to be scared of being alone. It has happened since he was in the hospital and on the vent. I know that he probably felt lonely when he was in the hospital, he probably wants to have company and I understand that but I think part of it is the fear that something will happen and no one will come. I can stay with him all the time, and I have a friend who is also staying with him, but we are BOTH getting burnt out and I am beginning to worry that this is not good for him. I know there are a lot of guys with vents and trachs who don't expect their parents to sit with them constantly. I know it is early, he hasn't been home for a long time but I don't know how to tell if he is developing a phobia and we are enabling it. Right now he is asleep and I am in the next room writing this email, and wondering if this is a good step for him, wondering if there isn't something else I can do to help him feel comfortable being alone, but mind you I am in the next room, and it doesn't mean I would never sit with him. Tonight Christian sat and watched tv with him. He has several times since Nathan got home, so I am wondering if this is also a good way to help him.

Terri

#22416

From: "Adele" <jasona65@...>
Date: Tue Oct 27, 2009 12:55 pm
Subject: RE: : Fear of being alone

navymom2josh

Offline

Terri, Has any kind of anti depressant or anti anxiety been RX for him? Being on a vent can be quite scarry. You of all people should know what goes on just by reading some of the posts off the DMD pioneer list. This is a tough thing to get use to.

Adele

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of momdmd
Sent: Tuesday, October 27, 2009 12:40 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] : Fear of being alone

This is a very difficult question to ask, and it relates to an issue I noticed with Alex but never asked about. My kids have always been good and playing both alone and with each other, but all of the sudden Nathan seems to be scared of being alone. It has happened since he was in the hospital and on the vent. I know that he probably felt lonely when he was in the hospital, he probably wants to have company and I understand that but I think part of it is the fear that something will happen and no one will come. I can stay with him all the time, and I have a friend who is also staying with him, but we are BOTH getting burnt out and I am beginning to worry that this is not good for him. I know there are a lot of guys with vents and trachs who don't expect their parents to sit with them constantly. I know it is early, he hasn't been home for a long time but I don't know how to tell if he is developing a phobia and we are enabling it. Right now he is asleep and I am in the next room writing this email, and wondering if this is a good step for him, wondering if there isn't something else I can do to help him feel comfortable being alone, but mind you I am in the next room, and it doesn't mean I would never sit with him. Tonight Christian sat and watched tv with him. He has several times since Nathan got home, so I am wondering if this is also a good way to help him.

Terri

#22415

From: "momdmd" <momdmd@...>
Date: Tue Oct 27, 2009 4:39 am
Subject: : Fear of being alone

imblueangel

Offline

Terri

#22414

From: "The Barclays" <the4beez@...>
Date: Tue Oct 27, 2009 3:28 am
Subject: RE: clogged j tube

the4beez2003

Offline

We alternate extension tubes every day. When transferring Ryan to his chair, we disconnect the feed tube right up to the J- tube. We use an extension tube for about a month then ditch it. We clean it out right away. Tough to clean but worth it.

There is nothing that goes into that extension tube that isn't flushed. We flush with Pedialyte just to give him some extra electrolytes but it could be just water in Ryan's case.

We use a feeding bag for about 4 -5 days before changing it. We flush it out once a day with just warm water.

Owen

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of momdmd
Sent: Monday, October 26, 2009 7:12 PM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] clogged j tube

oh my gosh we are having the same problem. I had to call the agency and they sent one of the nurses out with the same problem. Luckily it was in the extention and she tried the coke which worked. Also, they tried a pipecleaner or would have. I was thinking of the brush that came with the trach cleaning kit. I think I have to flush it more. How often do you usually flush yours? Ours was so awful and I was embarassed that I had tried tylonal (liquid) and it went back up towards the feeding bag lol We were worried we'd have to send him to ER. I have no idea what he weighs now, he was 72 when he got released he said.

Terri

The best and most beautiful things in the world cannot be seen or even touched.
They must be felt with the heart.
Helen Keller
http://www.skywriting.net/quotes/

----- Original Message -----

From: Diana Howe

To: MD-List@yahoogroups.com

Sent: Sunday, October 25, 2009 3:59 PM

Subject: [MD-List] clogged j tube

Hi I just brought my son home from ICU after getting an infection of some sort. Anyway he had just got a new feeding before he got sick. Anyway I went to give him a feed only to find out that the tube is clogged. I have tried putting coke through to break through the clog with no results. I really don�t think he is strong enough at this point to got back to the hospital for a new tube. It would take way too much out of him. He cant� even be in his chair for 30 mins with out wanting back in bed. He is down to 75 pounds and still recovering. But with this happening it just messes everything out. Does anybody have an idea on how to unclog a mickey J tube? I really don�t want to put him through any more.

Diana

#22413

From: "The Barclays" <the4beez@...>
Date: Tue Oct 27, 2009 3:23 am
Subject: RE: clogged j tube

the4beez2003

Offline

or us Dads.

Owen

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of stbrigid@...
Sent: Monday, October 26, 2009 2:13 PM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] clogged j tube

Great news Diana..I've had some of those type panic attacks and was really praying for you...noone knows how some of us Mothers have to live...Reina

----- Original Message -----

From: Diana Howe

To: MD-List@yahoogroups.com

Sent: Monday, October 26, 2009 4:52 PM

Subject: RE: [MD-List] clogged j tube

I know I was having a panic attack about the whole thing. I guess someone was watching over us.

Diana

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Susan
Sent: Monday, October 26, 2009 16:38
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] clogged j tube

Good news!

So glad you didn't have to go back to the hospital.

Susan

----- Original Message -----

From: Diana Howe

To: MD-List@yahoogroups.com

Sent: Monday, October 26, 2009 4:20 PM

Subject: RE: [MD-List] clogged j tube

Thanks everyone I was able to unclog the tube. It took about 4 hours . I used baking soda and warm water. I was just about to give up when it cleared. Thank God!!

Diana

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Susan
Sent: Sunday, October 25, 2009 20:35
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] clogged j tube

I'm a dietitian by profession & recommend trying warm water or cranberry juice but not Coke b/c it may cause tube degredation. The nurses at the nursing home where I work also have little brushes they use for the tubes we have when all else fails. I don't have personal experience w/ tube feedings at home but is there anyone you can call to ask medical questions? Even the hospital's ICU where your son just was? I hope you can get this sorted out so he doesn't have to get a new tube.

Good luck.

Susan

----- Original Message -----

From: Diana Howe

To: MD-List@yahoogroups.com

Sent: Sunday, October 25, 2009 3:59 PM

Subject: [MD-List] clogged j tube

Hi I just brought my son home from ICU after getting an infection of some sort. Anyway he had just got a new feeding before he got sick. Anyway I went to give him a feed only to find out that the tube is clogged. I have tried putting coke through to break through the clog with no results. I really don�t think he is strong enough at this point to got back to the hospital for a new tube. It would take way too much out of him. He cant� even be in his chair for 30 mins with out wanting back in bed. He is down to 75 pounds and still recovering. But with this happening it just messes everything out. Does anybody have an idea on how to unclog a mickey J tube? I really don�t want to put him through any more.

Diana

#22412

From: "momdmd" <momdmd@...>
Date: Tue Oct 27, 2009 2:12 am
Subject: Re: clogged j tube

imblueangel

Offline

Terri

The best and most beautiful things in the world cannot be seen or even touched.
They must be felt with the heart.
Helen Keller
http://www.skywriting.net/quotes/

----- Original Message -----

From: Diana Howe

To: MD-List@yahoogroups.com

Sent: Sunday, October 25, 2009 3:59 PM

Subject: [MD-List] clogged j tube

Hi I just brought my son home from ICU after getting an infection of some sort. Anyway he had just got a new feeding before he got sick. Anyway I went to give him a feed only to find out that the tube is clogged. I have tried putting coke through to break through the clog with no results. I really don�t think he is strong enough at this point to got back to the hospital for a new tube. It would take way too much out of him. He cant� even be in his chair for 30 mins with out wanting back in bed. He is down to 75 pounds and still recovering. But with this happening it just messes everything out. Does anybody have an idea on how to unclog a mickey J tube? I really don�t want to put him through any more.

Diana

#22411

From: BracinKnee@...
Date: Mon Oct 26, 2009 11:37 pm
Subject: MJ update: Home after 32 days in the hospital but sick again

bshanson68

Offline

Sorry I haven't been around but MJ was in the hospital for 32 days but she is sick again, so who knows what is going on. To read the latest update, due to it's size, go to her website:

http://www.caringbridge.org/visit/mjpurk

Brenda
caregiver to MJ, 21, SMA type 1

http://www.caringbridge.org/visit/mjpurk - MJ updates
http://www.our-sma-angels.com/b4sma - MJ's organization

Gratitude, can change your attitude, thus, your life, forever.

"When we choose not to focus on what is missing from our lives but are grateful for the abundance that's present....we experience heaven on earth." -Sarah Breathnack-

#22410

From: "Faye Sears" <Faye1973@...>
Date: Mon Oct 26, 2009 9:23 pm
Subject: Re: clogged j tube

daughteroffa...

Offline

Praise God!

Faye

----- Original Message -----

From: stbrigid@...

To: MD-List@yahoogroups.com

Sent: Monday, October 26, 2009 2:13 PM

Subject: Re: [MD-List] clogged j tube

Great news Diana..I've had some of those type panic attacks and was really praying for you...noone knows how some of us Mothers have to live...Reina

----- Original Message -----

From: Diana Howe

To: MD-List@yahoogroups.com

Sent: Monday, October 26, 2009 4:52 PM

Subject: RE: [MD-List] clogged j tube

I know I was having a panic attack about the whole thing. I guess someone was watching over us.

Diana

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Susan
Sent: Monday, October 26, 2009 16:38
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] clogged j tube

Good news!

So glad you didn't have to go back to the hospital.

Susan

----- Original Message -----

From: Diana Howe

To: MD-List@yahoogroups.com

Sent: Monday, October 26, 2009 4:20 PM

Subject: RE: [MD-List] clogged j tube

Thanks everyone I was able to unclog the tube. It took about 4 hours . I used baking soda and warm water. I was just about to give up when it cleared. Thank God!!

Diana

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Susan
Sent: Sunday, October 25, 2009 20:35
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] clogged j tube

I'm a dietitian by profession & recommend trying warm water or cranberry juice but not Coke b/c it may cause tube degredation. The nurses at the nursing home where I work also have little brushes they use for the tubes we have when all else fails. I don't have personal experience w/ tube feedings at home but is there anyone you can call to ask medical questions? Even the hospital's ICU where your son just was? I hope you can get this sorted out so he doesn't have to get a new tube.

Good luck.

Susan

----- Original Message -----

From: Diana Howe

To: MD-List@yahoogroups.com

Sent: Sunday, October 25, 2009 3:59 PM

Subject: [MD-List] clogged j tube

Hi I just brought my son home from ICU after getting an infection of some sort. Anyway he had just got a new feeding before he got sick. Anyway I went to give him a feed only to find out that the tube is clogged. I have tried putting coke through to break through the clog with no results. I really don�t think he is strong enough at this point to got back to the hospital for a new tube. It would take way too much out of him. He cant� even be in his chair for 30 mins with out wanting back in bed. He is down to 75 pounds and still recovering. But with this happening it just messes everything out. Does anybody have an idea on how to unclog a mickey J tube? I really don�t want to put him through any more.

Diana