Each year, Cure SMA provides thousands of families with vital support and resources to help them live active, engaged and hopeful lives.
Our programs provide tangible support for families affected by SMA, easing the difficulties of an SMA diagnosis, and showing each family that they are not alone and that there is hope. Our family support programs also help build and maintain a strong and unified community.
Above all, these programs are designed and delivered with respect and compassion for those we serve. We won’t stop working toward a world without SMA, but until we have a treatment and cure, we’ll do everything we can to improve quality of life for children and families affected by the disease today.
A Growing Need
Thanks to our community’s awareness efforts, more newly diagnosed families are reaching out to us. Our clinical care research and medical professional education mean that many of those affected by SMA have better access to improved care.
This means a greater demand for Cure SMA’s family support and patient care services. We see more families coming to our Annual SMA Conference, requesting our care packages or information packets, or needing our equipment pool. New medical issues are coming to the forefront. And when new SMA drugs are approved, care and support will be even more critical.
In the last year alone:
- We sent out 1,274 information packets and care packages.
- We lent out 296 equipment pool items.
- We distributed 126 CDs of SMA information to our international families.
- We gave away 98 wagons so families can transport their children around the house or yard, to visit friends or family, and to get to doctors’ offices or other appointments.
- A total 1,324 attendees participated in our 2015 Annual SMA Conference, including 276 researchers.
And in the last five years:
- Over 1,650 newly diagnosed families have contacted us.
- Our annual total of support items sent has increased more than three-fold.
In 2015, we also launched several new initiatives to address the changing and complex needs of our community.
- We released a new care series booklet on the clinical trials process.
- We welcomed Mary Schroth, MD, to our team as a Medical Professional Education Consultant. Dr. Schroth is focusing on how we can best advise and educate other medical professionals on SMA, in order to further improve families’ access to care.
The Mission of Family Support
Families affected by SMA turn to Cure SMA for information, guidance, encouragement, and most importantly, hope. We are committed to providing families the support they need for today, while we fund the research that will lead us forward to a treatment and a cure for SMA.
If you have questions about any of our family support programs, please call 800.886.1762 or email [email protected].