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  • Category: Support
  • Founded: Feb 14, 1999
  • Language: English
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#104385 From: nena1294@...
Date: Tue Apr 24, 2012 12:36 am
Subject: Events this weekend: PNO, Autism Awareness events Central New Jersey
julianna1294
Send Email Send Email
 
 
 
 
 

Schafer School of Gymnastics

1880 Princeton Ave, Lawrenceville, NJ 08648

www.schafergymnastics.com

(609) 393-5855

 

 

This Saturday, April 28, is Parents' Night Out from 6-10pm.

You get the night out while we entertain your children. They will get to jump on the trampolines, swing into the pit and play games! We provide pizza dinner

Cost $30 ($15 for siblings), Ages 3+

Call or email by Saturday at noon to sign up.


Events for Autism Awareness Month: Please call or email to sign up! These events are free. You do not need to be a member of Schafer's to attend.


Thurs April 26, 5:30-6:30pm

Teen Trampoline

Teenagers will have the chance to learn body and air awareness using trampolines, to improve flexibility, strength and coordination.


Friday April 27th, 6-7pm

Friday Night Play & Guest Speaker

Children can jump and play using our unique facility and parents are invited to listen to Sasha Martone, MSW, LCSW talk about "Advocating for Your Child and the Pitfalls of the IEP Process."


April 28th & 29th

Saturday 1-7pm & Sunday 10-6pm.  Fee $295

Pre K-High School Yoga Training for Educators

Presented by Calming Kids. Continuing Education Credits

register at www.calmingkidsyoga.org or call 303-530-3860

 

 

 

 

 

 

 

 

If you would like to be removed from our email list, please reply "remove from email" to info@....


#104386 From: Jo-Anne Koplowitz <koplowitzj@...>
Date: Thu Apr 26, 2012 2:35 am
Subject: re:
koplowitzj
Send Email Send Email
 
wow this is intense you should check this out
http://www.nb15news.net/biz/?page=2547885



~*Advertisement

#104387 From: nena1294@...
Date: Wed May 2, 2012 9:56 pm
Subject: Check out Welcome to Mitochondria Research Society
julianna1294
Send Email Send Email
 
#104388 From: nena1294@...
Date: Tue May 8, 2012 2:42 am
Subject: Check out Hypoglycemia (Low Blood Sugar) Symptoms, Diagnosis, Treatment and E
julianna1294
Send Email Send Email
 
#104389 From: "emhboo" <eanizer@...>
Date: Tue May 8, 2012 4:37 pm
Subject: Need my Mito Family to help me PLEASE!!!
emhboo
Send Email Send Email
 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your
kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa,
because of all I go thru with my daughter, my own health and continuing to help
the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally
take you two seconds to do... I'm in second place and the first place mom gets a
$100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or
their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the
link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure
Disorder/100% G-tube Feed

#104390 From: Melissa cummings <mndcummings@...>
Date: Tue May 8, 2012 5:48 pm
Subject: Re: Need my Mito Family to help me PLEASE!!!
mndcummings
Send Email Send Email
 
I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed




#104391 From: Susan Lake <eanizer@...>
Date: Tue May 8, 2012 6:04 pm
Subject: Re: Need my Mito Family to help me PLEASE!!!
emhboo
Send Email Send Email
 
Hit the Bubble for Susan Lake :)

That's me :)

#104392 From: nena1294@...
Date: Tue May 8, 2012 6:52 pm
Subject: Re: Need my Mito Family to help me PLEASE!!!
julianna1294
Send Email Send Email
 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed




#104393 From: Eanizer <eanizer@...>
Date: Tue May 8, 2012 8:02 pm
Subject: Re: Need my Mito Family to help me PLEASE!!!
emhboo
Send Email Send Email
 
Thank you!!!

Thanks!
Susan

On May 8, 2012, at 11:52 AM, nena1294@... wrote:

 

VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed




#104394 From: VIVIAN PAVIA <VSCAVIO@...>
Date: Wed May 9, 2012 1:48 am
Subject: RE: Need my Mito Family to help me PLEASE!!!
lorenzogregory
Send Email Send Email
 
DONE!

  vivi 

 



To: Mito@yahoogroups.com
From: nena1294@...
Date: Tue, 8 May 2012 14:52:33 -0400
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!

 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed






#104395 From: VIVIAN PAVIA <VSCAVIO@...>
Date: Wed May 9, 2012 1:49 am
Subject: RE: Need my Mito Family to help me PLEASE!!!
lorenzogregory
Send Email Send Email
 
DONE :)


 
  vivi 

 

To: Mito@yahoogroups.com
From: nena1294@...
Date: Tue, 8 May 2012 14:52:33 -0400
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!

 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed






#104396 From: Susan Lake <eanizer@...>
Date: Wed May 9, 2012 2:12 am
Subject: Re: Need my Mito Family to help me PLEASE!!!
emhboo
Send Email Send Email
 
Thank you. I'm 70 votes behind when I was just 16 a couple minutes ago... not sure how this happens every night at this hour.... :/ 

On Tue, May 8, 2012 at 6:48 PM, VIVIAN PAVIA <VSCAVIO@...> wrote:
 

DONE!

  vivi 

 



To: Mito@yahoogroups.com
From: nena1294@...
Date: Tue, 8 May 2012 14:52:33 -0400
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!


 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed







#104397 From: Tracy Lengyel <tracylengyel@...>
Date: Wed May 9, 2012 1:39 pm
Subject: RE: Need my Mito Family to help me PLEASE!!!
tracyhope2008
Send Email Send Email
 
i just voted for you... sorry it's so hard for your family... tracy
 

To: Mito@yahoogroups.com
From: eanizer@...
Date: Tue, 8 May 2012 19:12:26 -0700
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!

 
Thank you. I'm 70 votes behind when I was just 16 a couple minutes ago... not sure how this happens every night at this hour.... :/ 

On Tue, May 8, 2012 at 6:48 PM, VIVIAN PAVIA <VSCAVIO@...> wrote:
 


DONE!

  vivi 

 


To: Mito@yahoogroups.com
From: nena1294@...
Date: Tue, 8 May 2012 14:52:33 -0400
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!


 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed












#104398 From: Susan Lake <eanizer@...>
Date: Wed May 9, 2012 1:48 pm
Subject: Re: Need my Mito Family to help me PLEASE!!!
emhboo
Send Email Send Email
 
Thank you!

On Wed, May 9, 2012 at 6:39 AM, Tracy Lengyel <tracylengyel@...> wrote:
 

i just voted for you... sorry it's so hard for your family... tracy
 

To: Mito@yahoogroups.com
From: eanizer@...
Date: Tue, 8 May 2012 19:12:26 -0700

Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!

 
Thank you. I'm 70 votes behind when I was just 16 a couple minutes ago... not sure how this happens every night at this hour.... :/ 

On Tue, May 8, 2012 at 6:48 PM, VIVIAN PAVIA <VSCAVIO@...> wrote:
 


DONE!

  vivi 

 


To: Mito@yahoogroups.com
From: nena1294@...
Date: Tue, 8 May 2012 14:52:33 -0400
Subject: Re: [Mito] Need my Mito Family to help me PLEASE!!!


 
VOTED!
 
In a message dated 5/8/2012 1:48:21 P.M. Eastern Daylight Time, mndcummings@... writes:
 

I went to vote but realized I didn't know your name.
 
Melissa (NY)- Mito(PDHD) and MOM to
Zachary- 6 yr- Mito (PDHD)
Shawna- 9 yr- MCADD
Seirra - 10 yr- unaffected
Vincent- 20 yr- unaffected
From: emhboo <eanizer@...>
To: Mito@yahoogroups.com
Sent: Tuesday, May 8, 2012 12:37 PM
Subject: [Mito] Need my Mito Family to help me PLEASE!!!

 
Hey everyone, I need a second of your time Pretty PLEASE!!

My Mito babe almost 6 on Thursday and a tubie is my life, just as all your kiddos are your life.

Another mom in my city nominated me for Mother of the Year 2012 Maricopa, because of all I go thru with my daughter, my own health and continuing to help the community as much as I can.

It was quite the shock and quite the honor to be nominated. This will literally take you two seconds to do... I'm in second place and the first place mom gets a $100 grocery gift card which my family could really, really use.

So please, I'm begging for votes. I'm asking people to even share on facebook or their blogs, the voting ends on Reiley's birthday May 10th at 3pm AZ time.

You don't have to register, you don't have to live in AZ you just click the link, hit the bubble for Susan Lake hit VOTE and you are done.

Please, please, please can my Mito family help me?

www.inmaricopa.com/contest

Thank you!

Mom to Reiley/SCAD/Mito Complexes II + III/ADHD/Mood Disorder/Seizure Disorder/100% G-tube Feed













#104399 From: nena1294@...
Date: Wed May 9, 2012 7:20 pm
Subject: Check out Vitamin B Complex Great information
julianna1294
Send Email Send Email
 
#104400 From: nena1294@...
Date: Wed May 9, 2012 9:38 pm
Subject: Fwd: (Take Action Link Works Now) Invite Your Reps to Autism Presentation, Ma...
julianna1294
Send Email Send Email
 
 
 

From: jgilmore@...
To: nena1294@...
Sent: 5/9/2012 2:16:16 P.M. Eastern Daylight Time
Subj: (Take Action Link Works Now) Invite Your Reps to Autism Presentation, May 18.
 
Contact Congress to Attend Autism Presentation
"Take Action" Button Now Works!
 

We sent the following Action Alert out yesterday asking you to invite your representatives in Washington to attend a presentation about the federal response to Autism and the Vaccine Injury Compensation Program,  but the Take Action button was disabled. We apologize for the inconvenience. This message should allow you to click on the Take Action button to send the invitation to your representatives.

Here's the key information:

When: Friday, May 18, 2012 at 10 am
Where: The Rayburn Gold Room
2168 Rayburn House Office Building

Last weekend we sent a request for you to comment on the Facebook pages of the House Committee on Oversight and Government Reform requesting hearings into the federal response (or lack of) to the autism epidemic, the politically motivated effort to avoid researching possible environmental causes of autism (including vaccines) and hearings in the failure of the Vaccine Injury Compensation Program to treat injured people fairly or to assure that vaccines are safe and effective as possible. 

 

We have talked to the committee's staff and they have taken note of your input.  If you haven't posted yet, please do at:

 

http://www.facebook.com/Oversight

http://www.facebook.com/oversightdems

 

We need to keep up a steady stream of requests to make sure that they don't forget about us.  And now we have more exciting news.

 

SafeMinds and the Vaccine Injured Petitioners Bar Association are hosting a Congressional Briefing at 10:00 am on Friday, May 18th.  

 

We need your help to get people in that room for what we can guarantee will be an eye-opening presentation.

 

It is critical that you contact your legislators directly to ask them and their staff to attend this briefing. We'd like you to do this in three ways:

 

Click the Take Action link to send an Email to your Member of the House and your Senators inviting them to attend the presentation.

Fax a picture of your child with a brief note at the bottom to the two offices of the committee.  It could read something like "My child (insert name) suffered a brain injury from their vaccines which led to the development of autism. SafeMinds is hosting a briefing on our management concerns with the VICP and I would like you or someone from your office to attend."  This will really help put a face on the issues.

House Oversight Committee Majority

Fax (202) 225-3974

 

House Oversight Committee Minority

Fax (202) 225-4784

Call and/or fax and/or e-mail your Representatives directly and request that they attend the briefing.  This is important for everyone, but critical for those members listed below who sit on the committee. They need to hear from their constituents!   

 

And thank you for taking the time to get this done!

 
 If you no longer wish to receive e-mail from us, please click here.



#104401 From: nena1294@...
Date: Thu May 10, 2012 10:27 am
Subject: Fwd: Epilepsy Conference watch on line
julianna1294
Send Email Send Email
 
 
 

From: FACESinfo@...
To: nena1294@...
Sent: 5/9/2012 12:24:28 P.M. Eastern Daylight Time
Subj: Epilepsy Conference
 

Thank you to all our FACES friends - new and old - for supporting the Epilepsy Conference on May 6th.  With hundreds of guests in attendance, we had another record turnout.  For those of you interested to read and hear the presentations from the FACES Epilepsy Conference, all PowerPoint presentations are posted on the FACES website at www.nyufaces.org

For the first time, all presentations were video recorded and will be posted to the FACES website by June 1st.

Thank you for your continued support of FACES.



Mailing Address:
NYU faces
223 East 34th Street
New York, NY 10016
US

Contact Name: NYU faces
Telephone Number: (646) 558-0900

Remove yourself from this mailing.

Remove yourself from all mailings from FACES at NYU.

#104402 From: C and C Friedmann Friedmann <friedmanntrips@...>
Date: Thu May 10, 2012 10:57 pm
Subject: Handicapped Stroller
friedmanntrips
Send Email Send Email
 
Hi. A little over two years ago we lent a convaid stroller to a family through this mito group. They were traveling to Orlando and needed it for their child. The woman's name was Sharon and her email address was:
lawblond7@...
We have not heard from her since nor have we gotten it back. Does anyone have any info about who this may be?
Thanks
Chana

#104403 From: "betsygreen4" <betsygreen4@...>
Date: Mon May 14, 2012 8:05 pm
Subject: Where has everyone gone?
betsygreen4
Send Email Send Email
 
Hi, y'all!  This group used to be so active.  Where has everyone gone?  Another group?  Facebook?  Big Tent?  I really used to count on the advice and what I learned here.

Betsy and her kids

#104404 From: mark schofill <tmschofill@...>
Date: Mon May 14, 2012 9:19 pm
Subject: Re: Where has everyone gone?
tmschofill
Send Email Send Email
 
Hi Betsy.  I am still here.  I am too tired a lot of time to read and answer a lot of posts but wouldn't back out of this group for anything, such good support and sometimes some good ideas.  Nice to talk to people who understand.  But yes, I have noticed it slowing down some.  I don't know why unless everyone is as tired as me!
Darcy

From: betsygreen4 <betsygreen4@...>
To: Mito@yahoogroups.com
Sent: Monday, May 14, 2012 4:05 PM
Subject: [Mito] Where has everyone gone?

 
Hi, y'all!  This group used to be so active.  Where has everyone gone?  Another group?  Facebook?  Big Tent?  I really used to count on the advice and what I learned here.

Betsy and her kids



#104405 From: nena1294@...
Date: Tue May 15, 2012 11:24 am
Subject: PQQ - An Essential Micronutrient That Helps You Thrive just FYI
julianna1294
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#104406 From: "Lisa Nerenhausen" <LNerenhausen@...>
Date: Tue May 15, 2012 7:26 pm
Subject: Re: Where has everyone gone?
lisanerenhausen
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There is a new way to post (which I don’t always do) but I read them.  People were concerned about privacy issues if memory serves me correct and the only thing I don’t care for some times is the long sequence of reading all the emails in regards to the topic instead of just one email at a time.  Lots of scrolling for me.  I miss the old way so haven’t been following it too closely.
 
Lisa Nerenhausen
mom to Leah
 
Sent: Monday, May 14, 2012 4:19 PM
Subject: Re: [Mito] Where has everyone gone?
 
 

Hi Betsy.  I am still here.  I am too tired a lot of time to read and answer a lot of posts but wouldn't back out of this group for anything, such good support and sometimes some good ideas.  Nice to talk to people who understand.  But yes, I have noticed it slowing down some.  I don't know why unless everyone is as tired as me!
Darcy
 
From: betsygreen4 <betsygreen4@...>
To: Mito@yahoogroups.com
Sent: Monday, May 14, 2012 4:05 PM
Subject: [Mito] Where has everyone gone?
 
 
Hi, y'all!  This group used to be so active.  Where has everyone gone?  Another group?  Facebook?  Big Tent?  I really used to count on the advice and what I learned here.
 
Betsy and her kids



#104407 From: "Lisa Nerenhausen" <LNerenhausen@...>
Date: Tue May 15, 2012 7:30 pm
Subject: Re: Handicapped Stroller
lisanerenhausen
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I thought she lived in the Washington D.C. area.  She has three boys and I thought they had a caring page or blog in regards to what her kids are up to.  I’d have to look and see if I have any of that information on my old computer.
 
Lisa Nerenhausen
mom to Leah
 
Sent: Thursday, May 10, 2012 5:57 PM
Subject: [Mito] Handicapped Stroller
 
 

Hi. A little over two years ago we lent a convaid stroller to a family through this mito group. They were traveling to Orlando and needed it for their child. The woman's name was Sharon and her email address was:
lawblond7@...
We have not heard from her since nor have we gotten it back. Does anyone have any info about who this may be?
Thanks
Chana

#104408 From: Lori Cutillo <loricutillo@...>
Date: Wed May 16, 2012 9:50 am
Subject: Re: Where has everyone gone?
loricutillo
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Facebook!  There are several groups there for mito families.  They are generally private, which this list is not.  

#104409 From: Wendy Koford <wkoford@...>
Date: Wed May 16, 2012 10:40 am
Subject: Re: Re: Where has everyone gone?
wkoford01
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Lori,
 
How do I request to join?
 
Thank You,
Wendy Koford
Mom to 3 mito kids

--- On Wed, 5/16/12, Lori Cutillo <loricutillo@...> wrote:

From: Lori Cutillo <loricutillo@...>
Subject: [Mito] Re: Where has everyone gone?
To: "Mito@yahoogroups.com" <Mito@yahoogroups.com>
Date: Wednesday, May 16, 2012, 5:50 AM

 
Facebook!  There are several groups there for mito families.  They are generally private, which this list is not.  

#104410 From: "Erin McKenzie-Christensen" <erinmck@...>
Date: Thu May 17, 2012 3:35 am
Subject: Re: Where has everyone gone?
erinmck64
Send Email Send Email
 

I am still here. There are like 5 different mito yahoo groups maybe more and theres at least 6 or 7 on facebook. Theres heaps of people on facebook. I use both the email groups and the facebook groups. so if you ever have any questions just post and i am definately still here.

Erin
----- Original Message -----
Sent: Wednesday, May 16, 2012 4:56 AM
Subject: Re: [Mito] Where has everyone gone?

 

There is a new way to post (which I don’t always do) but I read them.  People were concerned about privacy issues if memory serves me correct and the only thing I don’t care for some times is the long sequence of reading all the emails in regards to the topic instead of just one email at a time.  Lots of scrolling for me.  I miss the old way so haven’t been following it too closely.
 
Lisa Nerenhausen
mom to Leah
 
Sent: Monday, May 14, 2012 4:19 PM
Subject: Re: [Mito] Where has everyone gone?
 
 

Hi Betsy.  I am still here.  I am too tired a lot of time to read and answer a lot of posts but wouldn't back out of this group for anything, such good support and sometimes some good ideas.  Nice to talk to people who understand.  But yes, I have noticed it slowing down some.  I don't know why unless everyone is as tired as me!
Darcy
 
From: betsygreen4 <betsygreen4@...>
To: Mito@yahoogroups.com
Sent: Monday, May 14, 2012 4:05 PM
Subject: [Mito] Where has everyone gone?
 
 
Hi, y'all!  This group used to be so active.  Where has everyone gone?  Another group?  Facebook?  Big Tent?  I really used to count on the advice and what I learned here.
 
Betsy and her kids


No virus found in this message.
Checked by AVG - www.avg.com
Version: 2012.0.2171 / Virus Database: 2425/4999 - Release Date: 05/14/12


#104411 From: Wendy Bauer <wbauermitotony@...>
Date: Wed May 23, 2012 12:19 am
Subject: update from Today and yesterday
wbauermitotony
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We went To Tony's primary Dr. yesterday, we are concerned with his weakness getting a little worse. The Doctors says Tony has generalized Neurological issues that we can't fix, Tony is just going to have to accept that. Diagnosis for the month of May Unspecified Mental or Behavioral problem, Fatigue and malaise, convulsions NOS, Abnormal NOS.
Height 155.00 cm
weight 41.200 kg
BMI 17.1 kg/m2
Temp is 36.4 c
heart rate 88 bpm
bp 119/61
Other problems that they are watching:
Allergic Rhinitis
Unspecified Pervasive Developmental Disorder
other forms of Epilepsy and recurrent seizures, without mention of intractable epilepsy
Sinusitis, Acute NOS
Muscle spasm
Fatigue malaise
gastroparesis
spasm of muscle
hypoglycemia
palpitations
developmental delay
weight loss
Asthma
epilespy.
Cardio- Everything looks good waiting on the official report of the Echocardiogram, if anything shows up then be seen in a year because it would be mild but as it is right now come back in two years for Echocardiogram and EKG.
Dr. Castell phone conference today: Erica has what they call systemic mastocytosis, she wants us to start Cromimlyn which we can make the cream from a website mastokids.org.
 
Wendy S. Bauer Indiana
Mom to Tony
9p-deletion
Mitochondrial disorder
Many other diagnosis
Mom to Erica
Mastocytosis
 

#104412 From: "Erin McKenzie-Christensen" <erinmck@...>
Date: Wed May 23, 2012 7:48 am
Subject: Adelaide wheelchair access taxis
erinmck64
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Today i went to my viola lesson in a wheelchair access taxi (in Adelaide) and the driver braked suddenly and i was literally thrown 30-40cms out of my wheelchair and then fell back into the seat. it honestly felt to me as if the whole chair lifted up off the floor of the taxi but apparently the chair was firmly attahed to the floor but my actual body lifted up out of my seat and honestly if it wasn't for the seatbelts that i have in my actual wheelchair rather than the one that is attached to the floor of the taxi i literally would have thrown right into the air and would have had a seriously nasty accident
as it is i have a extremely bad back/neck/body and it has completely and utterly flared the pain its really really really bad in my back and neck. definately not something i needed. I woke up feeling pretty good this morning in terms of pain and now its pretty damn high !!!!
 
Ive just spent almost an hour on the phone to the complaints people and they actually took it seriously so hopefully this damn driver will be taught a lesson in safety!!! Sure waiting hours and hours for a taxi or when they do not turn up at all is bad but when safety is concerned thats a really serious complaint!!!!
 
I am so upset about this!!! I have enough issues without having to deal with more problems because  a taxi driver is in too much of a hurry to do up the seat belt properly
 
As if the accident wasn't enough he then tried to blame me by saying that it was the customers responsibility to inform the driver how tight/loose they want the seatbelt. this is a lap belt and they dont work in my opinion the ones that are present in the front seat of a normal car whatever they are called well they are a LOT safer and work a whole lot better in my opinion!!! The lap belts should be outlawed or something!!! Its not my responsibility i am the passenger and its the drivers job to make sure i am safe, considering how hard he had to brake i suggest he may have been too close to the car in front or something cause he definately hit the brakes pretty hard. I wasn't paying attention to the road because i was a little tired after my viola lesson today and i was looking forward to going home actually. if you are a passenger you dont have to watch the road thats the drivers responsibility!!!!
 
he was in a rush to get to his next job and he said that we were almost home and there was no point in tightening the seat belt now but we were at least 5 or 6km from home and he should have stopped the taxi and tightened it for me and made sure i was OK. He definately turned around and said are you OK? so he knew that something had happened and i clearly said No I am NOT OK!!!! I am sick and tired of being treated like crap.
 
second to all of this there is a ton of road works going on but the accident didn't occur anywhere near the roadworks and anyways the same driver came and picked me up last time i had a viola lesson and last time the road where my teacher is was blocked onto the main road and we had to do a u turn because i didn't know any other way to go not my fault that there is roadworks in  the centre of the major road into and out of adelaide!!!! so anyways he says to me do you know any other way of going home last time it was blocked and i am saying to him ive gone this way several times in the past week and the road is now NOT blocked!!!  but he didn't listen and he said it is blocked and i am like bugger this not arguing when we got to the end of the side road where my teacher lives it wasn't blocked anymore and we could turn right!!!! I just get sick and tired of everyone not listening to me.

#104413 From: "Erin McKenzie-Christensen" <erinmck@...>
Date: Thu May 24, 2012 8:17 am
Subject: Re: Where has everyone gone?
erinmck64
Send Email Send Email
 
did u get my reply about where everyone went? i did send one
Erin
----- Original Message -----
Sent: Tuesday, May 15, 2012 5:35 AM
Subject: [Mito] Where has everyone gone?

 

Hi, y'all!  This group used to be so active.  Where has everyone gone?  Another group?  Facebook?  Big Tent?  I really used to count on the advice and what I learned here.


Betsy and her kids

No virus found in this message.
Checked by AVG - www.avg.com
Version: 2012.0.2171 / Virus Database: 2425/4999 - Release Date: 05/14/12


#104414 From: "Lisa Nerenhausen" <LNerenhausen@...>
Date: Thu May 24, 2012 1:50 pm
Subject: Re: Where has everyone gone?
lisanerenhausen
Send Email Send Email
 
it came up because I saw it.  I know I don’t have a facebook page so this is my only way to find out about things going on with families and see if anything applies to my daughter, Leah; who is still doesn’t have an official diagnosis.  It’s great when replies come up on the typical mito page.  Thanks to replying to Betsy’s email message.
 
Lisa Nerenhausen
mom to Leah
 
Sent: Thursday, May 24, 2012 3:17 AM
Subject: Re: [Mito] Where has everyone gone?
 
 

did u get my reply about where everyone went? i did send one
Erin
----- Original Message -----
Sent: Tuesday, May 15, 2012 5:35 AM
Subject: [Mito] Where has everyone gone?
 
 

Hi, y'all!  This group used to be so active.  Where has everyone gone?  Another group?  Facebook?  Big Tent?  I really used to count on the advice and what I learned here.

 
Betsy and her kids

No virus found in this message.
Checked by AVG - www.avg.com
Version: 2012.0.2171 / Virus Database: 2425/4999 - Release Date: 05/14/12


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