FightSMA is very grateful for all of our supporters, and one of the biggest friends we have is John Bell from the jam band Widespread Panic. He’s the godfather of Hannah Elliot of Hannah’s Buddies/FightSMA Tampa Bay. For many years, Mr. Bell has graciously donated his musical skills to concerts held on the weekend of the annual Hannah’s Buddies Charity Classic Golf Tournament. The video below was posted on YouTube, featuring highlights of this year’s concert at the The House of Blues in Orlando, Florida on January 22. We hope you enjoy it, and thanks again to John Bell for his support!

FightSMA’s Rhode Island chapter, Corinna’s Angels, recently asked friends and family to share their favorite recipes, and has put them all together to create a wonderful cookbook. They are available for only $20, and all proceeds benefit FightSMA!

These cookbooks are flying off the shelves, so be sure to get yours today! Contact Bob Calise at 401-486-8500 to get your copy today.

Seth & Tammy Trotman, sellers of the popular Scentsy line of candles, have made a generous offer that we can all sink our noses into.  The Trotmans, who are friends of Carice Smith of FightSMA Mechanicsville, have agreed to donate 100% of their commission from candle sales through Christmas to FightSMA!  So, be sure to use the link below to buy a candle for your best friend, next door neighbor, and even that Great Aunt you haven’t seen for 20 years.  Buy one for yourself too — you deserve it!  If you want your candle delivered by Christmas, it’s suggested you order by December 18, so get to it!
Scentsy – We make perfect scents!

By now, you’ve likely heard of the variety of nonprofits hoping to win grants from Pepsi, via the Pepsi Refresh Project.  We have another one you should consider supporting.  Hannah’s Hope Fund is an organization working toward a cure for Giant Axonal Neuropathy (GAN).  It’s a rare genetic disorder that slowly takes away one’s ability to walk, use one’s hands, speak, and swallow.  The disease is terminal.  GAN patients need a therapeutic gene delivered via the spinal cord, as SMA patients do.  As a result of this similarity, research into a cure for GAN benefits SMA patients, and vice-versa.

If Hannah’s Hope Fund wins the November Pepsi Refresh Project, it will be awarded $250,000 for gene therapy clinical trials.

To help, text the message “104051” to the number “73774” (it stands for Pepsi).  You can also vote online at  www.refresheverything.com/hannahshope.

17-year old Courtney Griffin, who is affected by SMA Type III, was recently crowned Homecoming Queen of Barrington High School in Barrington, IL.  Congratulations to the beautiful new Homecoming Queen!

Learn more about Courtney and Andrew’s Buddies of Illinois by clicking here.