Families of Spinal Muscular Atrophy
Every summer, I volunteer at the National Spinal Muscular Atrophy Conference held in a different region of the country each year. Spinal Muscular Atrophy is the number one genetic disease killer of children under the age of 2. The conference is a way for families from all over the world who are facing the challenges of this disease can come together to meet with scientists, doctors, researchers, and other children as they continue to hope for a cure to this fatal disease. I work in the daycare with both the children affected with SMA and their siblings while parents spend the day in meetings and at other events. Working directly with these kids is an incredibly rewarding experience. It is absolutely amazing watching the kids interact with eachother and being apart of their lives. At night, we put on events such as dance parties, carnivals, and movie nights where the kids are treated like kids and can forget about their inhibiting disease and wheelchairs. This organization has become extremely near and dear to my heart and I have made some incredible relationships with some of the strongest children in the world.
Check out their website for more information: http://www.curesma.org
(& don't forget to donate to the cause--there is still NO cure!!!)