SMAspace

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

Have an idea for SMAspace?? Feel free to provide some FEEDBACK. :)

Has SMAspace helped you and your family?? Please consider making a tax-deductible donation to support our community!

Birthdays

Birthdays Today

Birthdays Tomorrow

Links

SMA Organizations:

SMA Education:

Other Helpful Links:

Groups

AZ Group

18 members
NIV users

48 members

DynaVox EyeMax Users

12 members
SMA Research

135 members

Trach and Ventilator Con…

60 members

View All

Videos

FUN DAY WITH THE DUCKS AT CEDAR HILL GOLF COURSE.wmv

Added by Brad (Shira SMA Type 1 4yrs old)
wiggle

Added by natalie dawson
Hope and Light Foundation: Invest in SMA

Added by Lizzys Nina/Jeanna
Scarlett Reading to Jacob

Added by Jennifer Goodson

SMA News

smaspace: #ipscells Induced pluripotent stem cells generated from patients with ALS ... http://bit.ly/aieoVM

smaspace: #H1N1 California Stem Cell and ALS Therapy Development Institute Extend ... http://bit.ly/9krGid #SMA

smaspace: Twitter / GSFoundation: RT @FightSMA: Sign up for ... http://bit.ly/97jPxV :#SMA

smaspace: #ipscells Scientists use tiny circles of DNA to develop iPS cells Related ... http://bit.ly/cxTm75

smaspace: #ipscells BioTechniques - Novel transcription factor increases efficiency of ... http://bit.ly/cYCqsp

More…

Latest Activity

Angel replied to Debby St. Onge's discussion 'Valentines Day' in the group AZ Group

We are planning to be there as well. My kids are Madison & Ella. We will plan to bring some type of chocolate dessert.

16 minutes ago

Jennifer Goodson replied to Ella Karen's discussion 'Trilogy 100' in the group NIV users

Sarah, How are you humidifying the air? Dr. Schroth mentioned this to us when we were there, but we decided on the AVAPS because of the built in humidifier and the fact that we do not have room for an additional humidifier on the stroller or powerch…

43 minutes ago

Dawn (Aiden's Mommy) commented on Sue O'Neill's group 'DynaVox EyeMax Users'

The SLP we had through Early Intervention was useless, she was supposed to come out quarterly evaluate Aiden and make suggestions. She only came one time in 2 yrs, she kept saying she was overworked and he was a priority since he would never talk. I…

1 hour ago

Debby St. Onge commented on Angel's group 'AZ Group'

If you are going to the gathering on Sunday can you please go to the discussion section uner Valentines Day and let everyone know? We need a head count for food and Valentines. Thanks!

1 hour ago

T.J. Gooden (Nora's Dad) replied to Sam Bonsett's discussion 'First U.S. stem cells transplanted into spinal cord' in the group SMA Research

I email Richard from Neuralstem Inc to see if there is a way we can get updates on the trial. Keep your fingers crossed! This could be huge for us. Thank you SOOO much Sam for finding this article. You rock.

1 hour ago

Marie (Ava's mama) commented on Sue O'Neill's group 'DynaVox EyeMax Users'

I definitely want her to have help communicating. Ava is 18 months old, but the therapist said she was at a 2-year-olds level with her speech. I still kept asking for some kind of communication device, and she kept saying "I have been doing this for…

1 hour ago

T.J. Gooden (Nora's Dad) replied to Ella Karen's discussion 'Trilogy 100' in the group NIV users

Just an editorial comment but the Trilogy also has another benefit besides being small and fantastic. Due to it's primary purpose as a vent, certain medicaid waivers like the "vent waiver" make this the ideal choice. My insurance provider looked the…

1 hour ago

T.J. Gooden (Nora's Dad) and Ella Karen joined jana gundy's group

NIV users

There is a trach/ventilator group, but I thought I would add a group for users of the NIV protocol using bipap or ventilator!

1 hour ago

Jennifer Calafiore, Marie (Ava's mama) and Laura joined Sue O'Neill's group

DynaVox EyeMax Users

This forum will be a great place for people to give/receive support in using the DynaVox EyeMax Communication Device.

1 hour ago

Carlos & Jeanette's Mom updated their profile

2 hours ago

Julie (Jenica's Mom) added 2 photos

3 hours ago

Cortney..Ayden Trammell's momma replied to Devon Lovelace's discussion 'AMBU bag cleaning' in the group Trach and Ventilator Concerns

OK I know this is an older discussion but Ayden was trached in October and we have never had to bag him...knock on wood...but didn't know there was a filter...or that you could get new ones every so often...!?!?! HOw often should you get new filters…

3 hours ago