SMAspace

A Spinal Muscular Atrophy (SMA) network provided by Eminnea, Inc.

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Links

SMA Organizations:

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Groups

Make*A*Wish

50 members
SMA Type1 families

187 members

Future Children (PGD, Ad…

30 members
AZ Group

19 members

SMA Type II

203 members

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Videos

SMA News

smaspace: AZ Families SMA Event Registration: ______ Gold: $300 ______ Silver: $200. The AZ Chapter Familie... http://bit.ly/bcgERA :Families of #SMA

smaspace: Families of Spinal Muscular Atrophy Latest News: Families of SMA funded the early research for th... http://bit.ly/avhTYz :Families of #SMA

smaspace: #research Families of Spinal Muscular Atrophy Latest News http://bit.ly/crjaz4 #SMA

smaspace: #Mobility The splicing regulator Sam68 binds to a novel exonic splicing ... http://bit.ly/bHsP0R #SMA

smaspace: #Mobility Gene Therapy Rescues Mice with SMA | Quest Magazine Online http://bit.ly/dh862N #SMA

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Notes

Pepsi Refresh Project

Hey guys, Stop SMA has been selected to compete in the Pepsi Refresh Project. This could provide $250,000 for SMA research. We are currently in 4th place which is terrific. Please vote daily, you can vote one time a day. Yes, you get 10 new votes everyday but can only use 1

… Continue

Created by Nate Lee Mar 1, 2010 at 1:27pm. Last updated by Nate Lee 9 hours ago.

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Latest Activity

Brad (Shira SMA Type 1 4yrs old) replied to Erin Campos's discussion 'AA Diet'

Dawn its also important to insure that the vivonex does not exceed the nurtional requirments of the patient. Many diets I have seen are calculated way beyond an SMA childs nutritional needs as per Dr. Swoboda and Dr. Schroth's guidelines. I usually…

2 minutes ago

Sarah Turnbull joined Alysha's group

Make*A*Wish

For families that have been involved in Make*A*Wish or would like to be. Let's share our experiences.

4 minutes ago

Brad (Shira SMA Type 1 4yrs old) replied to Erin Campos's discussion 'AA Diet'

Here is my question to Mary: Hi Mary. I have a few questions. Thanks again for the advice about the free form aminos Shira has been doing really well on them. I was just wondering in the description of the AA diet it states, “Using this dietary appr…

6 minutes ago

Families of SMA added an event

Families of SMA Michigan Chapter's 5K Run, Walk-n-Roll & Family Fun Day at Hawk Island Park.

May 1, 2010 from 8:30am to 8pm

Help us develop a treatment and cure for Spinal Muscular Atrophy. You must register by April 15, 2010 to secure early registration fees.

12 minutes ago

Brad (Shira SMA Type 1 4yrs old) replied to Erin Campos's discussion 'AA Diet'

The 2 pack limit was created to insure that you don't overload the patient to begin with and to stabilize the patient on the diet. Many nutritionists calculate our children's dietary needs without taking their physical makeup into account which in t…

14 minutes ago

Samantha and vincent gaynor are now friends

19 minutes ago

Aldís Sigurdardottir replied to Hallgrimur Guðmundsson's discussion 'From PBA to Valproic'

Thanks guys for this, it´s no easy decision and while not taken everything is still ok :-)

26 minutes ago

Dawn Daws replied to Erin Campos's discussion 'AA Diet'

I always thought the 2 pks was the max? Are any other kids on more than 2 packs and if so how do you know it is time to increase ? Casey has been gaining weight with safflower oil, but the nutritionist wanted more vivonex instead.

36 minutes ago

Brad (Shira SMA Type 1 4yrs old) commented on Jennifer's event 'Dr. Bach's Seminar'

Jennifer do you live in Hollywood? My wife Maxine is from there and her mother still lives there.

41 minutes ago