NINDS Nonprofit Forum Day 1

NINDS Nonprofit Forum Day 1

IMG_20130910_114742_863NINDS (the National Institute of Neurological Disorders and Stroke)– Division of the NIH (National Institutes of Health) kicked off their Progress through Partnership Nonprofit Forum yesterday. It is an exciting, collaborative, and highly productive workshop covering many of the issues we need to address in the coming months as the research continues to rapidly progress. We heard much about what to do, and what not to do. The labyrinth of programs in the NIH mean that there may be opportunities despite certain funding challenges.

Dr. Story Landis, NINDS Director, gave a “State of the Institute” address that highlighted some great accomplishments, yet also painted a very bleak funding picture presently and for the foreseeable future. She gave a charge for Advocate groups to lead the way to affect change in this regard and find innovative ways to overcome these challenges.

Dr. Petra Kaufmann gave a great perspective of the challenges of clinical trials and how Advocate groups can push for more feedback from their families and help shape data collection mechanisms that are more “user friendly” to better drive compliance. Many of the suggestions she made around education and caregiver/local clinician team involvement are ones we are already implementing through the Duke Clinic :).

We then got the chance to meet our Program Directors. Program Directors are the individuals that help with GRANTS so great people to get to know. Dr. Vicky Whittemore is ours, and she was very eager to learn more about alternating hemiplegia of childhood. She also

We then had some success stories from several nonprofits to grow and affect policy change. Each had some great advice.

AFTD   Biology of our disease defines everything vocab perception politics opps, partners,  Use mission and values as a touchstone– know when to say no   Partner and leverage strategically NIH, Peer Org, Industry  It’s a business (board recruitment and board TRAINING Excellence in governance and strategy  TAKE RISKS!!!  Our goals too important

 Dystonia Medical Research Foundation  Collaboration is a key…  Video recording used as opposed to biomarkers… International coalition…Be a catalyst for discovery

Citizens United for Research in Epilepsy (CURE) Scientists need to help open doors for the advocacy groups, advocacy groups need to drive the patients to provide the info.  Keep their eye on the prize (personal stories remind them) focus on young investigators

PAN (Parkinson’s Action Network)   Having a voice on the Hill is critical. Help drive unified messaging on what government/industry can do for your disease group. Seek partnerships with common goals, even outside your disease group.

Then it was time for some fun and networking at a reception exclusively for the non-profit attendees.  Great conversations and ideas shared!


Mingling in the crowd

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