With Thanksgiving just a day away, we pose the question “What are you thankful for this year?” to members of the SMA community. Here are some of the answers we’ve received:

• I’m thankful for my angel-on-earth : )
• I am thankful for the most beautiful little girl, some of most helpful and dedicated nurses, and good fortune through all the trials and tribulations that have come my way this year…
• I am thankful for moments.
• My familia!
• I am thankful for the memories I have of the child that I lost to SMA and for hope for the future.
• family and friends that support and encourage Andrew and our family in dealing with SMA during the good times and hard times.
• Thanksgiving has come and gone in Canada, but I am thank for Miles and all the joy he brings me.
• My son. My husband. Good friends. Volunteer opportunities that keep me busy and full of purpose.
• I am thankful for my SMA patient that the drs said wouldnt live past 16 months and she turned 3 this past Saturday!
• That we have family and friends to support and help us… That Dr. Schroth, Lisa, and company are so close… : ) That God chose to bless us with our happy, sweet, smiley Lucy bug!
• I’m thankful for all my family & friends, it’s an interesting mix that is always there for us in one way or the other. I’m also thankful that my mom’s cancer is in remission again!!

Share your responses with us on Facebook, Twitter, or SMASpace.

Happy Thanksgiving!

Last week, Bill and Victoria Strong shared a story of meeting a man, Joe Barnick, who has inspired them in their care for their daughter Gwendolyn, who, like Joe, has spinal muscular atrophy (SMA).

From the Strong’s blog:

November 20, 2009

Joe Barnick, thanks for the inspiration!

This is such a small, small, tiny world in so many ways. Victoria and I have been researching and thinking through ways to use technology to help Gwendolyn communicate. There is a really cool application that we’ve been looking at, Proloquo2Go, that brings augmentative and alternative communication (AAC) to the iPhone/iTouch devices. It looks like it could potentially help Gwendolyn. I emailed support at AssistiveWare, the company that created the application, to ask a few questions and I received a very thorough response from a gentleman named Joe Barnick. It turns out that not only is Joe a very helpful customer support person at AssistiveWare, but Joe also has SMA. He is also the designer and editor-in-chief of the AssistiveWare Newsletter. He was very helpful and he sent me the YouTube video below that shows how he uses his Mac and an AssistiveWare application called KeyStrokes for “all the things he cannot do in the real world”. I feel so fortunate to have met Joe — for so many reasons. He’s an inspiration to me and he reminds me to never underestimate Gwendolyn’s abilities and — in his words — to “never stop fighting for your daughter and never give up hope! : )”. Joe, I can promise you that I never, ever, ever will!

I’m so glad that I met you Joe. Thank you for opening up my mind even more to what is possible and I look forward to keeping in touch! Keep up the great work at AssistiveWare…

Spinal Muscular Atrophy is too often unheard of among doctors. Over the years, FightSMA has been trying to build a list of medical professionals familiar with SMA and its effects. The existing list is a part of the SMA Guidebook on FightSMA’s website and can be found here. We would love the recommendations of SMA families and patients to help expand this list and to provide a valuable resource, especially to newly diagnosed families or those seeking a second opinion.

If you would like to recommend someone, we’d love to at least get their name, area of expertise and where they see their patients. If you have contact info, that would be even better. This information can be shared through email, Facebook, or Twitter.

Gabriella Garbero is an 18-year-old student at the University of Missouri. Like many freshman, she took part in rush which culminated in accepting a bid from the Kappa Kappa Gamma sorority. But with this experience, Gabriella made history at MU by becoming “the first woman in the university’s history to participate fully in rush while using a wheelchair.”

Gabriella has type 2 spinal muscular atrophy. To enter sorority houses during rush, a friend set up portable ramps so Gabriella could maneuver her wheelchair over stairs. Now that she is a Kappa Kappa Gamma sister, Gabriella keeps two temporary ramps at the house, which the sorority says will be replaced by permanent ramps. Despite these improvements to the house, Gabriella will not be able to live there due to additional accessibility limitations and her dependency on additional personal aides.

With the thousands of students with disabilities on campus, Gabriella does think it is strange that she is the first to pass this milestone. But, she does give her family credit for her decision to rush, saying “I was blessed to be raised in a family where I wasn’t limited just from being in a wheelchair.” Gabriella has already inspired others to follow in her path, as her roommate, who also uses a wheelchair, is considering the next rush season.

To read the full article from the Columbia Missourian, click here.