A Glimpse into 2013 and Beyond:
As the Thisbe and Noah Scott Foundation grows, we intend to initiate and foster sustainable research with a goal of no less than three researchers investigating three separate neuromuscular diseases per annum. We will only support the most groundbreaking studies with preeminent researchers such as Dr. Kevin Eggan. We know this can be done because we have already accomplished this with a model Laurian Scott devised for BVVL – which just two years after finding the gene is now conducting trials for Riboflavin therapy. And it’s working! We will take that successful model and apply it to every single pediatric neuromuscular disease in the hope of finding cures.
TNSF will continue to hold fundraisers nationally, looking to expand into new markets for awareness and gaining the hearts and commitments of additional sponsors and donors. Through fundraising, press and web integration and utilization of awareness tools such as the TNSF promotion video, TNSF’s mission will undoubtedly spread to new audiences.
We will also continue to develop and implement successful programs for patients and their families. Such programs are already in development as pilot programs. For instance, TNSF has determined a “hole” in mental health support for patients and families during their child’s illness as well as after a child has died. As it is so challenging physically to transport these children to and from physicians’ offices, much less therapists’, we have been searching for a way to bring therapists to patients’ homes, whether they live in major metropolitan city or miles away in the country. Out of that need we are devising a video series free to anyone, anywhere. Where this provides a much-needed service to our mission-specific families and patients, as with research the applications are always much farther reaching. No doubt the video series will help those suffering from other debilitating illnesses as well.