After her son William’s SMA type 2 diagnosis in April 2001, Heidi Johnson’s doctor immediately showed her the Cure SMA (then Families of SMA) website and said to look for support within the SMA community.
“After arriving home, we took the doc’s advice and opened up [the website] where we felt the most amazing support. We learned quickly we were not alone. We learned all about SMA which was important as we educated our family, friends and even our pediatrician,” Johnson said.
That spirit of support is what makes our community unique. And as a national organization comprised of 34 chapters, we know it’s important to leverage our collective strength and provide our community with personalized, local support.
At last week’s Cure SMA Leadership Summit, we gave an update on several of our new efforts that will help expand opportunities to get involved and receive support within our local chapters. From local galas and walk-n-rolls, to state advocacy, SMA treatment sites and our newly organized Summit of Strength program, Cure SMA offers a variety of ways to get involved and connect with your local community.
2018 Summit of Strength Program
Cure SMA is pleased to announce a slate of one-day local programs, or Summit of Strength, beginning mid-summer and continuing into fall 2018. The summits will be held in 16 locations across 15 states in the US. Through this program, the SMA community will continue to share experiences, advocate for one another, and learn about the latest advances in research and care.
The Cure SMA Summit of Strength Program will be held in the following states:
2018 Treatment Access Grants
Cure SMA recently announced grants from $650,000 in funding to increase capacity at SMA treatment sites across the US. Fourteen grants will be used to help reduce practical barriers that create delays for our community in accessing treatments and care. These barriers include pre-authorization and insurance approvals, scheduling, and clinic support. In addition, the grants will help to increase the number of affected individuals that sites can follow, treat and evaluate.
Direct communication with the leadership of state governments and agencies is critically important to achieving our goals. Cure SMA provides resources like a newborn screening state fact sheet and newborn screening handout for elected officials to make advocating at the state level easier for you and your family.
Plan or Participate in an Event
Interested in planning an event, or just want to learn more about the process? Cure SMA would love to hear from you and answer any questions you may have. Our development team will help plan a Walk-n-Roll, Evening of Hope, Golf Outings and more.
“We became staunch advocates for the disease and our son captured the hearts of our community as they helped us raise hundreds of thousands of dollars through the years at walkathons, golf tournaments, house parties, yard sales and more, so that this vital research could continue and lead to amazing breakthroughs like Spinraza,” said Johnson, a chapter leader in New England.
You don’t have to host an event to fundraise for Cure SMA. Many individuals and families choose to fundraise by participating in an existing event. These events give the participant the opportunity to set a goal for donation and reach out to their own network of family, friends and coworkers to help meet their goal. Check out our event calendar to see what’s happening in your area!
This spring, Johnson and her family have been preparing for William to graduate high school and begin college 3 hours from home, something they never thought possible.
“This journey with SMA has had some very scary moments along the way,” Johnson added, “but we feel so blessed to have met the people we have met, done the things we have done, and know in our hearts that our family was made stronger because of what happened that day in the doctor’s office seventeen years ago.”