there is a group on Yahoo known as mitooldies.

There are several messages in that group on a daily basis.

cheers, J.P.

My condolences too...losing a spouse or parent is beyond difficult any
time of the year, just even harder amidst the holidays. I hope and pray
you both have good memories and faith to comfort you. hugs,

Vikki Stefans, M.D., pediatric physiatrist (rehab doc for kids) at UAMS
and Arkansas Children's Hospital.  Working Mom of Sarah T. and Michael C.,
and wife of Henry Stefans. Every mom is a working mom!- OK, dads too.

On Sun, 26 Nov 2006, togd2b2 wrote:

> --- In MD-List@yahoogroups.com, dragonflylili@... wrote:
>> my heart and prayers are with u during these trying times.. please
> accept my deepest condolances. i know exactly what you and your family
> is going thruough. i just lost my wife a couple of weeks ago..again my
> thoughts and prayers are with you and your family.
> Mike and family of the late Doreen Reil
>>
>> My Father passed away this morning at 1:45 am...  He as I and my
>> daughter all have CMT.. He died peacefully in his sleep...  He was 66
>> yrs old..

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

From: dragonflylili@...

To: MD-List@yahoogroups.com

Sent: Sunday, November 26, 2006 5:35 AM

Subject: [MD-List] My Father Passed away

My Father passed away this morning at 1:45 am... He as I and my daughter all have CMT.. He died peacefully in his sleep... He was 66 yrs old..

I am so sorry for your loss. I will remember your family in my prayers.

Marie



-----Original Message-----
From: MD-List@yahoogroups.com on behalf of togd2b2
Sent: Sun 11/26/2006 6:46 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re: My Father Passed away

--- In MD-List@yahoogroups.com, dragonflylili@... wrote:
>my heart and prayers are with u during these trying times.. please
accept my deepest condolances. i know exactly what you and your family
is going thruough. i just lost my wife a couple of weeks ago..again my
thoughts and prayers are with you and your family.
Mike and family of the late Doreen Reil
>
>
> My Father passed away this morning at 1:45 am...  He as I and my
daughter all
> have CMT.. He died peacefully in his sleep...  He was 66 yrs old..
>

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

From: dragonflylili@...

To: MD-List@yahoogroups.com

Sent: Sunday, November 26, 2006 5:35 AM

Subject: [MD-List] My Father Passed away

My Father passed away this morning at 1:45 am... He as I and my daughter all have CMT.. He died peacefully in his sleep... He was 66 yrs old..

Tod, there is a MidwestMito@yahoogroups site that perhaps you didn't
know about.  And, have you considered getting a muscle biopsy (fresh)
at Cleveland (Dr. Kerr)?  Also, there is a VERY helpful group which
is more active than the MidwestMito one, called
Mito@yahoogroups.com.  You will likely find some answers there.
Then, www.mitoaction.org and www.umdf.org.
Hope this helps, Suz

--- In MD-List@yahoogroups.com, "Tod" <WePushWA@...> wrote:
>
> Hi Susan, I'm Tod. My son, Kyle (11) and myself (48) have Non-
> specific Myopathy. The doctors believe what we have is a type of
> Mitochondrial Disease. They know very little about this type that
we
> have, so we feel like a couple of ginea pigs, victims to unknown
> tests and experiments as a new medical journal is written. We live
in
> Wisconsin.
>
>
>
> --- In MD-List@yahoogroups.com, susan zelenko <francescainboston@>
> wrote:
> >
> > Hello,
> >
> >   My daughter, who is 7, has Mitochondrial Disease.  We suspect I
> may have a shadow of it myself, as well as my own mother.
> >
> >   I wondered how many other people on this list have Mito?
> >
> >   We live in Wellesley, MA.
> >
> >   Thanks,
> >   Susan Zelenko
> >
> >
> > ---------------------------------
> > Everyone is raving about the all-new Yahoo! Mail beta.
> >
>

--- In MD-List@yahoogroups.com, dragonflylili@... wrote:
>my heart and prayers are with u during these trying times.. please
accept my deepest condolances. i know exactly what you and your family
is going thruough. i just lost my wife a couple of weeks ago..again my
thoughts and prayers are with you and your family.
Mike and family of the late Doreen Reil
>
>
> My Father passed away this morning at 1:45 am...  He as I and my
daughter all
> have CMT.. He died peacefully in his sleep...  He was 66 yrs old..
>

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

From: Chris Coulson

To: MD-List@yahoogroups.com

Sent: Thursday, November 23, 2006 9:54 PM

Subject: [MD-List] UPDATE-ME

Dear Family,
Sorry it has been so long between posts. I wasn't getting enough
oxgen so the DR. has now got me on 6 liters at night and as needed
during the day. I hope everybody had a good thankgiveing and I've
been praying for everyone.

For those who believe remember that GOD is still in control of all
things and that HE will nopt put more on us thatn what we can bare and
will always make a way out.
GOD Bless

Dear Family,
     Sorry it has been so long between posts.  I wasn't getting enough
oxgen so the DR. has now got me on 6 liters at night and as needed
during the day.  I hope everybody had a good thankgiveing and I've
been praying for everyone.

     For those who believe remember that GOD is still in control of all
things and that HE will nopt put more on us thatn what we can bare and
will always make a way out.
                         GOD Bless

Hi, I from Mexico, for a coincidence prescribed me
Losartan for the heart. But I dont feel any physical
change. Although, the doses that I take maybe is very
minor that use in mice, or I are in a very late stage.

Salutes

Ricardo

2a. Re: New Article: BBC NEWS | Health | Stem cells
> 'treat muscle disea.
>     Posted by: "JoyceGlass@..."
> JoyceGlass@...
>     Date: Tue Nov 21, 2006 12:57 pm ((PST))
>
> I would like to know more about Losortan.  This is
> the first I have heard
> about it so I guess my son's cardiologist doesn't
> know about it.  Does anyone
> here use that drug?  Thanks.
> Joyce
>






___________________________________________________________
Do You Yahoo!?
La mejor conexión a Internet y <b >2GB</b> extra a tu correo por $100 al mes.
http://net.yahoo.com.mx

Greetings all...

Has anyone in this group here heard anything from Terri Trensey recently?

I've been wondering how she and her sons have been doing.  If anyone
has seen her on instant messenger or happens to have a phone number
for her or knows what state she lives in I would really appreciate if
you could you provide me with it off group.  Thank you so much.

-Alan A.

alan99@...

Sorry to hear about that. At least you'll know she's in a better place and not suffering anymore. My thoughts and prayers go out to you.

 - Michael. R.

Yes, it will. People need good information about the different therapies being
developed.

Marie
Marie Pichaske
Administrative Coordinator
Center for Genetic Medicine
Children's National Medical Center
111 Michigan Ave, NW
Washington, DC 20010
202.884.6029
202.884.6014 (FAX)



-----Original Message-----
From: MD-List@yahoogroups.com on behalf of JoyceGlass@...
Sent: Tue 11/21/2006 3:54 PM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List] New Article: BBC NEWS | Health | Stem cells 'treat muscle
disea...

Marie, do you think this promising treatment you spoke about will be
discussed at the December 9, 2006 seminar, Clinical Trials:  What's In it for
You?,
being held in Washington, D.C.?

Joyce

This all sounds promising...though I don't personally get that many Mdx
mice or dogs in my clinic. Sometimes it gets hard- emotionally as well as
practically - to keep up with all the new things that are tantalizing but
not immediately available.

The one Arthur just posted about has apparently not even had a clinical
trial with any muscle disease but sounds possibly helpful. See a comment
at http://hum-molgen.org/NewsGen/11-2006/msg05.html and a bunch of
articles at:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Search&db=PubMed&term=kinase+i\
nhibitor+of+NF%2DkappaB+kinase+2+%28IKK2%29&tool=QuerySuggestion

Re something more immediately available though, besides steroids - what is
everyone hearing/doing about the Losartan thing? Any of your cardiologists
switching to it (it is an angiotensin receptor blocker) from the usual ACE
inhibitors yet?

Vikki Stefans, M.D., pediatric physiatrist (rehab doc for kids) at UAMS
and Arkansas Children's Hospital.  Working Mom of Sarah T. and Michael C.,
and wife of Henry Stefans. Every mom is a working mom!- OK, dads too.

On Thu, 16 Nov 2006, Rhonda wrote:

> Has everyone seen this.....sure brightens my day even though its
> raining.......
>
> http://news.bbc.co.uk/2/hi/health/6144908.stm

I am so sorry to hear about your wife.  I had a daughter born last
year with the congenital form of Myotonic Dystrophy so we are just
in the beginning stages of this disease.

I will keep you in my prayers.

Lisa


--- In MD-List@yahoogroups.com, "togd2b2" <togd2b2@...> wrote:
>
> dear group,
>
> just wanted to let everyone know that my wife passed away last
night
> from complications due to mytonic dystrophy.
> hopefully there will be a cure for these nasty diseases in the
future.
> the family of doreen reil
>

For those who missed that article and wish to read it, go to

www.mdausa.org

ON the front page of the site, look to the right column entitled what's
new

cheers, J.p.

--- In MD-List@yahoogroups.com, "Lisa Vittek" <Lisa@...> wrote:
>Welcome,Lisa. I'm sorry to hear about your baby girl. I'm Jenny,mom
to Jayson 14yrs with CMT.
>
> Hi,
>
> I would like to join this group.  My daughter Kayla was born last
year with
> CMMD.  She was very severe but has improved quite a bit in the
last year.  I
> am looking to meet other families going through similar stuff so I
thought
> this group would be interesting.
>
> Lisa
> Aka: Baby Kayla's Mom
>
>
> Lisa Vittek
>
> Email: Lisa@...
> Home: (916) 788-2798
> Cell: (916) 276-2798
>
>
> -----Original Message-----
> From: MD-List Moderator [mailto:MD-List-owner@yahoogroups.com]
> Sent: Sunday, November 19, 2006 6:47 PM
> To: Lisa@...
> Subject: Yahoo! Groups: Welcome to MD-List. Visit today!
>
>
> Hello,
>
> Welcome to the MD-List group at YahooGroups, a free, easy-to-use
email group
> service.  Please take a moment to review this message.
>
> To start sending messages to members of this group, simply send
email to
>   md-list@...
>
> If you do not wish to belong to md-list, you may unsubscribe by
sending an
> email to
>   md-list-unsubscribe@...
>
> You may also visit the eGroups web site to modify your
subscriptions:
>   http://www.YahooGroups.com/mygroups
>
> Regards,
>
> Ray Harwood, Ray@...
> Moderator, MD-List
>
>
> Your use of Yahoo! Groups is subject to
http://docs.yahoo.com/info/terms/
>

A similar article was in our local daily newspaper here in Ottawa Canada

Our stem cell research center here has expanded into a new building.

cheers, J.P.


--- In MD-List@yahoogroups.com, "Rhonda" <rbowden@...> wrote:
>
> Has everyone seen this.....sure brightens my day even though its
> raining.......
>
> http://news.bbc.co.uk/2/hi/health/6144908.stm
>
> Enjoy......Rhonda - mom of Dakota (6) with DMD
>

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

From: togd2b2

To: MD-List@yahoogroups.com

Sent: Tuesday, November 14, 2006 1:50 PM

Subject: [MD-List] death of wife due to mytonic dystrophy

dear group,

just wanted to let everyone know that my wife passed away last night
from complications due to mytonic dystrophy.
hopefully there will be a cure for these nasty diseases in the future.
the family of doreen reil

Hi Beverly,

We're in Canada and don't get any OT included in our IEPs.  Ian gets a
"stategies" (homework/study skills) block in place of P.E.  We take him to
the pool at our local hospital when this class falls at the end of the day
(every 7th), as he is in all academic classes (even honours math!) and
doesn't want to fall behind.  The pool has a floor which raises and lowers,
making it easy to wheel him into it and then lower the floor for him to walk
around.  (He lost his ability to walk nearly 2 years ago.)  We had to
arrange these dates with the OT:  she has to be in the building while we are
there, but is usually doing her end of the day paperwork while my husband
goes in the pool with Ian.  Another MD and his dad recently joined them as
well, so it's a bit more interesting.

Hope this helps.

Johanna