What is the NINDS Nonprofit Forum and Why Should People Care?

There was a little celebrating going on last week when dozens and dozens of patient advocacy groups met to engage in the annual Nonprofit Forum hosted by the National Institute of Neurologic Disorders and Stroke (NINDS). Every summer since The Brain Donor Project was formed in 2016, we’ve attended this gathering (virtually when necessary) to learn about the latest research and what the National Institutes of Health is doing to advance the science of brain disease.

The excitement was because three new drugs to treat neurologic disorders were approved in the first half of this year –  one for ALS, one for Rett’s Syndrome (which is a rare genetic disorder) and one for Friedreich Ataxia. That last one is the first ever treatment which was 25 years in the making for the rare neuromuscular disorder. It was that long ago that the Friedreich Ataxia Research Alliance (FARA) was founded at the kitchen table of a couple whose 11-year-old son was just diagnosed. While it is not a cure, this treatment slows progression of the disease for patients who are losing their abilities every day. Researchers and families are hopeful that it will lead to a better understanding of the disease…and eventually a way to cure it.

It is that hope that propels every single one of the patient advocacy groups in attendance – representing everything from Alzheimer’s Disease to Cerebral Palsy to Parkinson’s Disease and some so rare they’re simply named after the gene that had a problem…and that anomaly causes the disorder. Many of these groups started the same way, as a cadre of parents who upended their lives to learn about the disease that was threatening to take the life of their child. It’s gut-wrenching and life-affirming at the same time to hear their stories. Parents say they’re often told, upon receiving a devastating diagnosis, that there’s nothing that can be done. To simply go home and love their child.

We’re so fortunate that so many parents decided the one thing they could NOT do was to do nothing. We applaud their tenacity, passion and ability to bring resources to the right people. And we’re here to help support their mission, as well as ours, as they all lead back to a common goal—advancing science to improve lives.