We are extremely proud of our organization's management. We encourage you to review our finacials.
OUR ORGANIZATION, OUR MISSION
Where There’s a Will There’s a Cure is dedicated to raising funds for the purpose of supporting scientific research that is actively pursuing cures and/or treatments for those affected with Myotubular Myopathy.
Where There’s a Will There’s a Cure was founded by the family and friends of William Richard Whiston. We are a not-for-profit 501(c) (3) charitable organization with the sole purpose of raising funds to support medical research for Myotubular Myopathy (MTM). Myotubular Myopathy is a rare genetic disease with clinical manifestations of muscle weakness and pulmonary complications.
Although there are variants, as with any condition, most children affected will never crawl or walk and will require breathing assistance due to their severe muscle weakness. Myotubular Myopathy only affects the muscles and does not impact intelligence. Our children are bright, affectionate and happy; despite being medically fragile and severely disabled. They are inspiring.
William has the genetically confirmed diagnosis of x-linked Myotubular Myopathy. Traditionally x-linked Myotubular Myopathy was a fatal condition in infancy with a life expectancy of usually less than two years. Expected life-span appears be improving as medical technology advances. Nonetheless, it is a grim diagnosis for any parent to receive. This is why William’s family and friends have decided to actively raise funds for a cure by founding Where There’s a Will There’s a Cure.
A cure for something so rare and devastating may sound like a dream or a hope. After William’s diagnosis, we came across very exciting research. Gene therapy research is being actively pursued with the potential to move toward clinical trials. However, as with any rare or orphan disease, funding this exciting research is always a challenge.
We welcome you to join us in our journey and battle with Myotubular Myopathy. We are excited about our fundraising efforts and are overjoyed to have you on our team.
Very Truly Yours,
Melanie Whiston (William’s Mother)
Where There’s a Will There’s a Cure
“All our dreams can come true – if we have the courage to pursue them.” - Walt Disney