Spinal Muscular Atrophy (SMA) is the number one genetic cause of death for infants. Cure SMA is dedicated to the treatment and cure of SMA, and funds groundbreaking research and provide families the support they need for today.
I have a personal connection to this cause. Both of my daughters have SMA - Heather is 27 and Jess is 25. I am hoping to raise awareness and money not only for my daughters, but for all of those affected by this disease.
Heather and Jess have been dealing with this disease all of their lives, as SMA is a genetic condition and they were both diagnosed as infants. However, they have not let the disease hold them back from living their lives to the fullest. It has not been easy for them, and life has presented many struggles, but they both continue to work hard in their lives to be productive, contributing members of society. Both have their undergraduate degrees, are working full time while also are pursuing graduate degrees.
For many years we have been hoping and praying for any treatment/cures for this disease. Recently, there has definitely been progress in terms of medical advancements, and Cure SMA has been instrumental in providing funding to forward this research, but they always need more help. We encourage you to go to the Cure SMA website (curesma.org) to read about some of the exciting studies that are going on.
Last year, I ran the race as an individual to raise awareness and funding for SMA. This year, Cure SMA is sponsoring a team to really help to get the word out. I was blown away last year with the incredibly generous support of our family and friends. I try to occasionally post SMA research updates on my Facebook page - there is so much hope and progress in the research - but there is still much more to be done. If you can donate any amount toward this very important cause - our family would so appreciate it!!