Today, Friday, January 22nd, is the last day to cast your vote in support of Spinal Muscular Atrophy research in the Chase Community Giving campaign on Facebook.

The charity that receives the most votes will win the top prize of $1 Million and five runners-up will get $100,000 each. The Gwendolyn Strong Foundation (GSF) is trying hard to hold on to 6th place - a $100,000 eligible position.

GSF has pledge to give 100% to SMA awareness and research deemed most promising by the SMA community. Within 90 days after winning the Chase Community Giving prize, GSF will execute a unique online voting campaign and distribute all funds to the winning programs recommended by prominent and committed SMA scientists and voted most important by the SMA community. Thanks to the first round of voting, the Gwendolyn Strong Foundation (GSF) won $25,000 which has already been distributed to research.

You can only vote for the GSF once, so in order for SMA to have a chance at this critical funding, we need you to not only vote on Facebook, but get your friends and family involved as well.

Go to http://VoteForSMA.com to vote and to learn more.

Thanks to previous votes, the Gwendolyn Strong Foundation (GSF) won $25,000 for Spinal Muscular Atrophy (SMA) research in the Chase Community Giving campaign on Facebook. Now, for only one week from January 15th to January 22nd, SMA has an opportunity to win much, much more!

The charity that receives the most votes will win the top prize of $1 Million and five runners-up will get $100,000 each. GSF has pledge to give 100% to SMA awareness and research deemed most promising by the SMA community. Within 90 days after winning the Chase Community Giving prize, GSF will execute a unique online voting campaign and distribute all funds to the winning programs recommended by prominent and committed SMA scientists and voted most important by the SMA community. You can only vote for the Gwendolyn Strong Foundation once, so in order for SMA to have a chance at this critical funding, we need you to not only vote on Facebook, but get your friends and family involved as well. Go to http://VoteForSMA.com to vote and to learn more.

Congratulations to our friends at the Gwendolyn Strong Foundation. Their phenomenal outreach across the internet successfully garnered enough votes for the Foundation to be named to Top 100 list in the Chase Community Giving Campaign on Facebook. This honor comes will a $25,000 award and the chance to move on to round two where they will compete for a $1 million grant.

From the Gwendolyn Strong Foundation:

December 16, 2009
Gwendolyn Strong Foundation Top 100 Charity, Wins $25,000 Grant From Chase Facebook Campaign

This is truly unbelievable, incredible!

Today, we received news from Chase that the Gwendolyn Strong Foundation was selected as one of the top 100 charities, based on YOUR votes, in their Chase Community Giving campaign on Facebook. Thus, GSF will receive a $25,000 grant from Chase and will advance to round 2 of the campaign with a chance to win as much as $1 Million.

We’re still gathering information and to be honest it’s still sinking in, but we wanted you all to know this amazing news right away since none of this would have been possible without each and every single one of your votes and your personal, passionate efforts to prop the Gwendolyn Strong Foundation up on your shoulders. This is another humbling example of how this vibrant, active SMA community and every person that this horrible disease touches can collectively accomplish anything that we put our minds to as one, united, motivated voice.

We are excited to be donating 100% of this grant to Dr. Hans Keirstead’s promising SMA stem cell program at UC Irvine. As most of you know, this groundbreaking research has the potential to cure SMA and have a material, positive impact on all science forever. We know that this grant will help Dr. Keirstead and his team accelerate the process to get this treatment to human clinical trials as safely and efficiently as possible and to the children in need of a cure.

From the bottom of our hearts, thank you, thank you, thank you to each and every one of you. Now, on to ROUND 2! As a community, let’s go get that $1 MILLION to help CURE SMA once and for all!

Click here to go to the Chase Community Giving campaign on Facebook to see the top 100 charities.

Click here to read the press release from Chase.

Don’t know what spinal muscular atrophy (SMA) is? Learn more here.

This request comes from Bill and Victoria Strong of the Gwendolyn Strong Foundation and Neda Zadeh, M.D., Medical Genetics Fellow at Stanford University. They are reaching out to mothers of children with spinal muscular atrophy to ask if they would participate in a study that “may help pave the way for SMA carrier screening to be offered to more women.”

From: Neda Zadeh, M.D. — To the Claire Altman Heine Foundation:

You are invited to participate in a research study on the possible association between Nuchal Translucency (NT) measurement and fetuses affected with Spinal Muscular Atrophy (SMA). Our goal is to determine whether there is an association between increased NT measurements and SMA. If so, diagnostic testing for SMA may be offered to women with increased NT and no evidence of a chromosome abnormality of the fetus. We are only recruiting mothers of children confirmed to have SMA by molecular testing.

Involvement in this study is entirely voluntary and confidential. It will require your permission to access particular medical records for both you and your child. Your participation will not involve invasive procedures such as blood draw or tissue sampling. There will be no monetary compensation for your participation.

If you are interested in participating, or would like to hear more about this study, please contact me at (650)721-1439.

Sincerely

Neda Zadeh, M.D.
Medical Genetics Fellow
Stanford University
Division of Medical Genetics

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…

Bill Strong, who founded the Gwendolyn Strong Foundation with his wife Victoria and who recently joined the FightSMA Board of Directors, was invited to do a radio interview for “Focus on Issues.” This wonderful interview, which aired four times during this past weekend, covers a broad range of subjects from how the Strong’s daughter Gwendolyn is doing to the need for more research to how individuals can help in the fight against spinal muscular atrophy (SMA).

Click here to listen to the whole interview

Michael Jay Paskin and Steve Taylor don’t appear to know each other, but from opposite sides of the country, both are using their physical strength to fight a deadly disease that robs its victims of their strength - spinal muscular atrophy (SMA).

Paskin is training to complete the Ironman Arizona triathlon which consists of a 2.4 mile swim, a 112 mile bike, and a 26.2 mile run. He started TriathlonForACure.com to document his training, but also to raise awareness of SMA and funds for the Gwendolyn Strong Foundation. Paskin says that his goal “is to parallel the hard work and determination it takes to complete each triathlon with the hard work and determination it will take to eliminate SMA.” To read more about Michael Paskin’s efforts, click here.

Last month, Taylor completed a 50-mile “ultra marathon” in Washington, DC. The police officer from New Bedford, MA ran in honor of his friends’ 22-month old son Owen who has SMA. Taylor said, “I was thinking of Owen and that drove me not to quit.” Through this race, Taylor was able to raise $3,000 in donations for Owen’s family and he plans to run an even longer race in Owen’s honor next year. To read more about Officer Taylor’s run, click here.

As you know, efforts are majorly under way to support the SMA Treatment Acceleration Act (HR 2149, S 1158). Thank you all for the tremendous amount of hard work and dedication you have shown already to getting this bill passed!

Over August recess, there is a full court press to get more cosponsors and we are initiating an aggressive grassroots campaign. The newest grassroots strategy is “Tweet for a Cure” (thanks to the Gwendolyn Strong Foundation). Tweet for a Cure is an example of SMA for SMA (Social Media Advocacy for Spinal Muscular Atrophy). Let’s use this powerful tool to our advantage!

The Strongs have made this so easy for Twitter users out there. From GwendolynStrong.com:

Today, we launched a new EXTREMELY simple way for you to let your Congresspeople know that the “SMA Treatment Act of 2009″ is legislation that is important to pay attention to. “Tweet For A Cure” allows you to automatically Tweet a message to your Representatives and friends based on your ZIP code. Four simple steps. 1-2-3-4…

Here’s how:

1. Go to EndSMA.org/twitter
2. Enter your ZIP code
3. Enter your Twitter username and password
4. Click “Tweet”

That’s it!

Make sure to let your friends know about how easy it was to use EndSMA.org/twitter to sound off to your Congresspeople by Tweeting about it, blogging about it, posting it to your Facebook status, emailing it, etc.

Special thanks must go to our dear friend Josh Lippiner for helping us on this project. It wouldn’t be possible without him. Thanks Josh!

After you’ve done that, be sure to pass along the link to Tweet for a Cure (http://endsma.org/twitter) to your friends, family, and coworkers that are on Twitter!

If you have any questions at all about Tweet for a Cure, please feel free to ask!

Tweet on for SMA!

Update to posting “Driving to cure spinal muscular atrophy“:

Newspapers and press outlets across the country have picked up on the story of the Strong’s journey. Even the Associate Press ran an article. Check out some of the news pieces by visiting The Gwendolyn Strong Foundation press page

Bill and Victoria Strong of Santa Barbara, California dove into the fight against Spinal Muscular Atrophy (SMA) after their daughter Gwendolyn was diagnosed with the most severe form of the disease, type 1. Not only did the Strong Family found the Gwendolyn Strong Foundation to raise awareness and research funding, but they started the Petition to Cure SMA. More than 64,800 people worldwide have signed the petition to show their support for the SMA Treatment Acceleration Act which was re-introduced in both the House of Representatives and the Senate.

The Strongs recently began a new project - turning a family reunion into an opportunity to raise awareness and funding for SMA research. The family will be driving from California to Mississippi, 5,000 miles round trip, so that Gwendolyn can meet her 104 year old great-grandfather. They are asking donors to Sponsor a Mile, with the proceeds going to support the Foundation’s mission.

The Strong’s and their campaign were profiled by Santa Barbara’s KEYT-3 news: