Directions Spring 2020

SMA Treatment Discoveries Inspire Attendees of 9th Annual Hope on the Hill Event Advocacy Update Left: Dr. Francis Collins with Derek, Tina and Julian Lewis; Middle: Rep. Cathy McMorris Rodgers; Right: Rep. Greg Walden

More than 180 people from the SMA community—including families, government officials, and industry partners—attended the 9thAnnual Hope on the Hill Congressional Dinner on December 3, 2019, at The WillardHotel inWashington, D.C. The event, which raised $195,000 to fund advocacy efforts, research, and family support services, featured a keynote address by National Institutes of Health (NIH) Director, Dr. Francis Collins, and remarks from several Members of Congress. Dr. Collins described the amazing progress in SMA research and how the entire research community has been inspired by the dramatic discoveries and successes in SMA research and development. “When [others] see what you all have been able to accomplish in SMA, they are inspired, they are uplifted, and encouraged. And you can see how academic researchers and industry have gathered now to see rare disease as an opportunity for advancement,” said Dr. Collins, who oversees a $39 billion NIHmedical research budget. He concluded his remarks by telling Hope on the Hill attendees that the NIH remains a committed SMA partner, noting that, “We want to continue this fight until there is an answer for every person who has every formof this condition.”

The evening also featured remarks by four Members of Congress. Rep. GregWalden (Oregon), Rep. Fred Upton (Michigan), Rep. Cathy McMorris Rodgers (Washington), and Rep. Michael Burgess (Texas) each spoke about the importance of the bipartisan 21st Century Cures Act, signed into law in 2016, and its role in accelerating research for treatments and cures for rare diseases, such as SMA. They also discussed their commitment to SMA and the rare disease community, and plans to expand patients’ access to new treatments and health technology through legislation they are calling Cures 2.0. Guests also heard from event co-chairs, Greg and Shannon Zerzan, Walter Robb, a parent of children with SMA, and Cure SMA President, Kenneth Hobby. Hope on the Hill, which began in 2011 as a small dinner, has grown into a major Washington, D.C. event that has raised more than $1.4 million for Cure SMA. The 10th Annual Hope on the Hill Congressional Dinner is scheduled for Wednesday, December 2, 2020 at The Wil- lard Hotel in Washington, D.C.

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DIRECTIONS | SPRING 2020

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