Hope on the Hill Advances Key SMA Legislative Priorities

This year’s 4th Annual Hope on the Hill Congressional Dinner in Washington D.C. was a great success. Building on of this year’s Annual SMA Conference—also held in Washington D.C.—the Hope on the Hill Dinner brought together families, government, and industry leaders to work on shared goals like increasing awareness, advancing treatments for SMA, and improving patient care.

Held on December 3 at the Willard InterContinental Hotel in Washington D.C, the event featured keynote addresses from Rep. Greg Walden (pictured above), and Kenneth Hobby, president of Cure SMA.

The event also raised $154,000 for SMA research and family support—$4,000 over the original goal, and more than $30,000 over last year’s event.

Our thanks to Greg and Shannon Zerzan, who created and organized the event. Thanks also to our guests, the Honorable Reps. Sean P. Duffy, Scott Garrett, Erik Paulsen, Pete Sessions, Fred Upton, and Greg Walden.

Thank you to top sponsors Biogen Idec, Cheniere Energy, National Association of Broadcasters, McGraw Hill Financial, and The PNC Financial Services Group.

Legislative Updates

The activities held as part of Hope on the Hill have already shown tangible results.

On Wednesday evening, the House of Representatives passed the ABLE Act with bipartisan support: nearly 96% voted in favor of the bill. The bill now goes to the Senate for approval. On the PPMD blog, Annie Kennedy shares a little more about the ABLE Act and what this will mean for families in our community.

On Thursday, representatives from Cure SMA and Biogen Idec met with several key Senate leaders to discuss the Newborn Screening Saves Lives Act. This legislation ensures that the critically important federal newborn screening program will continue to function and identify newborns with deadly but treatable chronic illnesses. This bill had been passed by the House but had yet to be acted on by the Senate.

After those meetings, the Senate created an amended version addressing issues, such as informed consent, that are important to our community. This bill is expected to be voted on by the Senate this week, and will then be sent back to the House so they can vote to approve the amended version.

An update on the progress of both bills will be posted later this week.

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