6th Annual Congressional Dinner Furthers SMA Advocacy Work
This year’s 6th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, November 29, bringing together families, government, and industry for an important evening of collaboration.
We are excited to have a number of special guests join us, including Rep. Kevin Brady, Rep. Sean Duffy, Rep. Jeb Hensarling, Rep. Bill Huizenga, Rep. Erik Paulsen, Rep. Fred Upton and Rep. Greg Walden. Walter Robb, Co-Chief Executive Officer of Whole Foods Market, will be the keynote speaker.
As we reach the end of a year featuring historic news for several of the drugs in the SMA pipeline, we remain focused on educating, involving, and engaging all groups in our community: families affected by SMA, governmental and regulatory groups, insurance and payers, and the biotech and pharmaceutical companies that are developing and testing SMA drugs. We need to work now more than ever to make certain that regulators, payers, and industry partners understand the impact of SMA, and create solutions that will address the areas most important to us.
Around the Hope on the Hill event, we will also be meeting with congressional representatives, and hosting meetings of our collaborative industry group, our newborn screening coalition, and others. These meetings will allow us to further current advocacy work—including our FDA Engagement Initiative, the upcoming Patient Focused Drug Development Meeting, our Newborn Screening Partnership, as well as other new ventures such as the collaborative industry group and a coverage and payment project.
Already, this year’s event has raised $240,500—adding to the total of over $600,000 raised in the first five years of the event. Special thanks to Greg and Shannon Zerzan, who founded and host this event, and to the sponsors who have made this event possible:
New Direction Sponsors
- NAB (National Association of Broadcasters)
- United Healthcare
To see a complete list of sponsors, please visit the 6th Annual Hope on the Hill website.
Pictured: House Speaker Paul Ryan addresses the 5th Annual Hope on the Hill Dinner in 2015.