SMAspace

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

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

Latest Activity

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
For families that have been involved in Make*A*Wish or would like to be. Let's share our experiences.
4 minutes ago
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
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
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
Thanks guys for this, it´s no easy decision and while not taken everything is still ok :-)
26 minutes ago
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
Jennifer do you live in Hollywood? My wife Maxine is from there and her mother still lives there.
41 minutes ago
1 hour ago
Got it. That's what we have in our van as well. A great inverter!
1 hour ago
We've got the drum too! But after a little while I'm begging him to play with something else.
1 hour ago

Forum

Erin Campos

AA Diet 6 Replies

Started by Erin Campos. Last reply by Brad (Shira SMA Type 1 4yrs old) 2 minutes ago.

Hallgrimur Guðmundsson

From PBA to Valproic 6 Replies

Started by Hallgrimur Guðmundsson. Last reply by Aldís Sigurdardottir 27 minutes ago.

Nate Lee

300W Pure Sine Wave Inverter 10 Replies

Started by Nate Lee. Last reply by Nate Lee 1 hour ago.

Danielle (Karah's Mom)

Fractures for Type1s: what was done....??? 2 Replies

Started by Danielle (Karah's Mom). Last reply by Danielle (Karah's Mom) 2 hours ago.

shawna/ kaylas' mom

medicaid and pulse ox 9 Replies

Started by shawna/ kaylas' mom. Last reply by Brianna McDanel 5 hours ago.

Kathryn Norton

Families of SMA online fundraising issues? 16 Replies

Started by Kathryn Norton. Last reply by Karen Shiesley 10 hours ago.

Jessica

cough machine inverter for car? 5 Replies

Started by Jessica. Last reply by Brad (Shira SMA Type 1 4yrs old) 17 hours ago.

Jacinda Chan

Independent Living

Started by Jacinda Chan 20 hours ago.

Paula Saxton

School evacuation plan 2 Replies

Started by Paula Saxton. Last reply by Paula Saxton 21 hours ago.

 
 

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