Forum Held on Partnering with NIH: Essential Tremor Patient Advocates Look to Build Relationships with Scientific Community

For two days in late September, the National Institute of Neurological Disorders and Stroke, NINDS, on the NIH campus held its eighth Nonprofit Forum called “Progress Through Partnership,” which provided a wonderful way for nonprofits who support and educate about their specific medical condition to learn how clinical and translational research at NINDS works. Forty-three health organizations or patient foundations were there in attendance.

Two things were notable about this forum, one being that Dr. Story Landis, Director of NINDS gave remarks along with others from NINDS in which she as well as the others made it clear that they want a closer relationship with the patient foundations and nonprofit organizations. With a closer relationship, they can conduct more effective research as a result of understanding patients’ needs, and it makes it easier to recruit patients. Also of note was that the forum panel consisted of patient advocates who had created nonprofits/ foundations that in the not-so-distant past partnered with NIH in finding treatments. They were there to report on their accomplishments to us. What encouragement! A few were foundations for rare diseases that affect between 2200 to 1 million people, which makes it more remarkable that they were able to make progress and see pharmaceutical products come to market.

Panel speakers were generally people who either had a condition themselves or with family members who had it. The panel was impressive not because they had perfectly figured out how to work with NIH to make things happen but for their personal perseverance and accomplishments. In the process they got to know NIH clinical researchers and worked together with NIH to reach the mutual goal of stimulating research and seeking cures or clinical interventions. Outside of NINDS they made inroads through the use of lobbyists, created patient registries, raised research funds, sought grants, conducted their own surveys, and created or identified Centers of Excellence such as university medical centers that have been established to conduct research and provide the best care for patients with a particular condition.

One speaker described how their nonprofit that supports the rare disease Ataxia went from having zero pharmaceuticals to having many in part because they created a patient registry that could easily and very quickly help the pharma companies get patients for a study. This information should bring hope to those with Essential Tremor since it is not a rare condition but one that affects 7 million potential customers of a medication.

Lisa Gannon
Silver Spring Support Group

Click here to see the 2 day videocast of the “Progress Through Partnership: NINDS 8th Annual Nonprofit Forum”