As some of you know, a rare disease has impacted our family in the last year. Despite the many patient stories I’ve helped to tell over the years, you never really know what it’s like to face a diagnosis, treatment, and uncertainty until it hits home. Even more daunting is knowing there is no cure and very little research looking for one.
But we want to help change that.
I am working with the National Organization for Rare Disorders (NORD) with an ambitious goal. By raising $35,000 in the next few years, we will help seed funding for Neurosarcoidosis research. When this target amount is reached, NORD begins the process of issuing a request for research proposals. NORD's Research Grant Program funds only the best proposals that are most likely to result in research breakthroughs that can be applied to the diagnosis or treatment of people living with Neurosarcoidosis.
The journey starts now. On September 30th I’ll run the first of several races to raise money towards my research goal. This will be a long journey, but step by step, I know we can do this!