SMA Advocates Meet With House and Senate Offices

By Cure SMA | Published On May 11, 2018

SMA Advocates Meet With House and Senate Offices

On Thursday, April 26, Cure SMA traveled with more than 70 spinal muscular atrophy advocates to Washington DC to meet with congressional offices. The advocates represented 24 states and DC. The purpose of the advocacy day was to advance life-changing opportunities for our community through SMA research and newborn screening.

The visits also emphasized the importance of the recent vote by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) to recommend nationwide newborn screening for SMA.

As part of this effort, Cure SMA and the SMA Newborn Screening Coalition have been working with members of Congress to circulate a letter encouraging Health and Human Services Secretary Alex Azar to approve this ACHDNC recommendation without delay. During the visits, advocates encouraged members of Congress to add their names to this letter.

As a result of your advocacy, more than 15 senators and representatives have signed on to the letter to Secretary Azar. We thank Representatives Greg Walden and G.K. Butterfield, and Senators Orrin Hatch and Edward Markey for championing this effort.

Advocates also encouraged Congress to increase funding for SMA research and federal newborn screening programs in the FY19 budget. Though the FY19 budget will not be voted on until later this year, offices have already begun putting this bill together.

What Happens Next

Cure SMA has also sent a letter to Secretary Azar on behalf of our entire community. Secretary Azar has until July 8, 2018, to approve this recommendation.

Be sure to follow our Facebook, Twitter and Instagram to receive updates and learn more about future opportunities.

Read the House letter 

Read the Senate letter 

Read Cure SMA’s letter 

Watch a video recap of our Hill Day 

See pictures and read more about the Hill Day 

Topics: Our Impact, Advocacy, Front Page News

© 2018 Cure SMA | Privacy Policy

Powered by Blackbaud
nonprofit software