Today is a monumental day for Spinal Muscular Atrophy. At the present time, together as a community, we have accomplished what many believed to be the impossible. To others, including my own family, I have pledged to raise astronomical amounts of money to fight this disease. Sometimes, even the closest members of my inner circle have become nervous with my promises………………But I have never doubted. I may not have known how we would accomplish the task at hand, but I was raised on the principles that hard work and a pure heart will always lead to positive outcomes.
When we decided to create The 200 commitments, it was just an idea. An idea that grew out of necessity. We created this campaign to ensure that the program with the best pre-clinical data in the history of this disease would make it to the clinic. We may not have known how we would raise the money, but we knew it was necessary for our disease. The real credit however, belongs to YOU, our community who took this idea and made it a reality. Without YOU, the 200 for SMA, would have simply become a failure. YOU have made this all posible with a unified vision of where we need to go. YOUR golf outings and YOUR bake sales are what has made this campaign. Whoever believed that YOUR events would not be able to fund a clinical trial was Dead Wrong. You see, YOUR efforts have inspired me, but even more importantly, they have inspired others.
We were recently contacted by someone who took notice of The 200 Commitments, inspired by the families working so hard to make a difference in this disease. It was your blogs and stories that have made a lasting impact. This person wanted to help change this disease. This donor, who wishes to remain anonymous, has donated…………. $400,000 to The Sophia’s Cure Foundation in recognition of your efforts. This money, in its entirety, will be donated to the Kaspar Labs for Gene Therapy. This $400,000 will be added to the $100,000 The Sophia’s Cure Foundation has in hand and has already pledged to commit, for a NEW $500,000 grant. This grant will be used to pay for Critical studies required by the Food and Drug Administration prior to a program moving into human clinical trials.
Working together, we as a community have raised half of the $1,000,000 needed to take this program out of the labs. This was done in just a few months. This new grant keeps this program on schedule and on target. We are eternally grateful to this amazing donor. The impact this person’s actions will have on our disease is immeasurable. This grant will help change our disease forever. To our donor, from the bottom of our hearts, thank you for your kindness and compassion on behalf of all of our kids. We are now half-way to our goal and even closer to a new reality.
To those of you who have been contemplating making the commitment to The 200 Commitments, there is no better time. The momentum is on our side. Please consider joining in our effort. Be part of the miracle that we are all making, together.
May you all have a Happy Father’s Day!