Letter From the Founder
April 22, 2019
Dear families and friends,
Over the last year and half, Terry’s Foundation has grown from a small organization generating capital for promising research projects into not only a catalyst for change but also an engine. Over six months ago, we embarked upon a journey which would come to define us – the formation of a collaboration to develop customized therapeutics for Duchenne. Since that time, we have made remarkable strides in this process as the vision begins to transform into reality.
As someone who has had three generations of family impacted by the terror that Duchenne brings, I am excited about the progress and potential. While we appreciate our beginnings, the time has come to take our organization to the next stage. And so, to better expand our mission, we have changed our name to Cure Rare Disease. Moreover, the customized therapeutic platform we are developing through our collaboration has broadened its focus to related rare, genetic diseases, as the science has potential across these areas.
With our rebrand, we have also launched a new website, www.cureraredisease.org, which we encourage you to visit. To catalyze the growth of the organization, we have brought on a small, lean compliment of staff including our new Chief Development Officer, Bill Patjane, and our new Grants Director, Nancy Sandman. Lastly, we have added additional events to our lineup. In additional to our annual educational seminar on July 21st, and gala, we are hosting a bike ride fundraiser on Cape Cod on September 21st. I welcome you and your family to reach out, continue to engage with and share the work we are doing and look forward to seeing you at our next event!
Thank you for supporting Terry’s Foundation for Muscular Dystrophy and thank you for continuing to support our organization in its next chapter.
All the best,
Founder, Cure Rare Disease