A Weekly Advocacy Message from Research!America: The innovation imperative: It’s about Max

Dear Research Advocate:

This week, the research advocacy community suffered a tremendous loss. John Rehm, husband of Diane Rehm, passed away Monday. Diane, the host of The Diane Rehm Show on NPR, was honored by Research!America last year for her advocacy with the Isadore Rosenfeld Award for Impact on Public Opinion. Her late husband was a friend and longtime supporter of the Parkinson’s disease community. Our thoughts are with the Rehm family during this difficult time.

As you pursue your advocacy efforts, we hope the newest fact sheet in our series about the human impact of research will prove useful. Max Hasenauer was diagnosed at 22-months-old with X-linked Agammaglobulinemia (XLA). He is alive today because of research that enables him to receive infusions of antibodies every three weeks. While this technique has been life-saving, more research is desperately needed to address the profound challenges Max continues to face. Thank you for helping to ensure that Congressional Offices are seeing these fact sheets. We continue to receive positive feedback from the Hill thanks to your efforts to share the fact sheets broadly.

We extend heartfelt congratulations to the winners of this year’s Brain and Behavior Research Foundation Productive Lives Award, which recognizes individuals who have contributed in extraordinary ways to helping those living with mental illness. Francis Collins, MD, PhD, Director of the National Institutes of Health, and Thomas Insel, MD, Director of the National Institute of Mental Health, are among the award recipients. Dr. Collins, Dr. Insel and the other awardees  –  by fighting to unleash the potential that research holds for life-changing discoveries to help those in need – are heroes for both causes, and we are humbled by their contribution to our nation and our world.

Dr. Collins also joined research and biotech leaders from across the globe for the BIO International Conference this week. Collins outlined several public- and private-sector initiatives that will dramatically accelerate research and drug development. This is encouraging news, and federal funding for basic research is critical to laying the groundwork for innovative partnerships in the future. Read our blog posts about the convention here.

For Ask Your Candidates!, we’ve continued to receive great photos/selfies from patients, the advocacy community, and scientists about why they support medical progress. Like Max’s story, these photos connect the dots between medical progress and the lives of patients and their families, students, caregivers, professionals, friends, and colleagues. You can view the selfies/photos here. Have you submitted your photo yet?

This week’s letter was authored by Ellie Dehoney, Vice President of Policy and Advocacy at Research!America.

Sincerely,

Ellie Dehoney

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