December 23, 2016 the U.S. Food and Drug Administration approved Spinraza (nusinersen), the first drug approved to treat children and adults with spinal muscular atrophy (SMA), a rare and often fatal genetic disease affecting muscle strength and movement. Spinraza is an injection administered into the fluid surrounding the spinal cord.
August is SMA awareness month and we are challenging ourselves and YOU to help us spread awareness and complete 100 Miles for SMA. Challenge your friends, groups, teams and families to join us on the Facebook event page and post your daily or weekly progress and let us know when you hit 100 miles! This is a virtual event and can be completed anywhere! We will be there to cheer you on!
Have you ever wondered what to do with the old wedding dress in the back of the closet? The "Everyone is a Bride" Pub Crawl is a great way to reuse that old wedding, or bridesmaid dress from your closet. Lets meet up at Bronson Park and raise some awareness for Spinal Muscular Atrophy!
Sarah Kennedy participated in a “Conversation on Child Cures” with the Energy and Commerce Committee Chairman Fred Upton (R-MI), Ranking Member Frank Pallone, Jr. (D-NJ), and Rep. Diana DeGette (D-CO) on Wednesday, March 23, 2016. Sarah, along with several other panelists, discussed the reality of facing rare childhood diseases, and the need for additional funding and support for research that could unlock cures. For a full report on the panel, please follow this link: https://energycommerce.house.gov/news-center/press-releases/curtain-call-conversation-child-cures-rocks-house
Dale Earnhardt Jr is wearing cream colored gloves this month for SMA awareness.
Dale Jr. will autograph them at the end of the month and put them up for bid on Ebay! They can be YOURS!
RunS2S is hosting a challenge of moving 100 Miles in August for two very special girls, Brooke and Brielle, and to bring awareness to Spinal Muscular Atrophy!
JOIN US HERE! on.fb.me/1JZeTGC
Lets bring awareness to SMA by moving 100 awesome miles in August, you never know whose life you'll change!
PLEASE SHARE THIS SO WE CAN GET AS MANY INVOLVED AS POSSIBLE!
HOW IT WORKS:
Run, Walk, Motocross, bike, skateboard, Workout Class, Yoga, Pilates..ANY movement counts towards your miles!
10Min = 1Mile
Log your miles in the Facebook event, receive amazing support, make new friends, encourage others to get their miles in!
We are making a difference! Learn more here.
A bipartisan bill that would make significant changes to the process for developing new drugs and medical devices overwhelmingly passed the House in a 344-77 vote Friday morning.
The bill, called 21st Century Cures, was cheered by rare across-the-aisle support from politicians, with 230 co-sponsors nearly evenly split between Democrats and Republicans. The pharmaceutical industry, patient advocacy groups, and medical organizations also support the bill, which calls for an additional $8.75 billion for the National Institutes of Health.