On Thursday, April 26, more than 70 chapter leaders, event organizers and board/committee members, representing 24 states and DC, will gather in Washington DC for two days of networking, learning, and advocacy. The activities include a day of advocacy on Capitol Hill, meeting with House and Senate offices, and a day of training and information sharing on research, support, care and more.

Advocating for the Community

Continuing the momentum of two major milestones, the recommendation of SMA to the RUSP and increased federal funding for newborn screening, the advocacy day will assist in advancing life-changing opportunities for our community.

For Max Lasko and his parents, Jonathan and Kristen, their visit to the state capital in Annapolis, MD, highlighted the power of advocacy and human connection, and motivated them to continue advocating.

“Our day in the state capital was a valuable opportunity to forge connections with our governmental representatives, raise awareness about SMA, and “put a face to the issue” of SMA for our legislators. The experience definitely left us wanting more…to find more ways to advocate for our SMA community at the national, state, and local level,” Jonathan said. The Laskos will be part of the team that will travel to Capitol Hill on Thursday, April 26.

Engaging the Community

In recent years, our community has seen tremendous breakthroughs and accomplishments that would not have been possible without the dedicated support of our chapter leaders, event organizers and families. The Leadership Summit, to be held on Friday, April 27, will provide leaders in our community with the tools and information they need to continue building strong chapters.

Chapters support the mission of Cure SMA in several ways, including:

  • Providing a base of community and support for affected families, whether sharing practical advice or simply having someone nearby who understands the complexity of the disease
  • Working together to organize community building and fundraising events
  • Keeping members informed of opportunities for local advocacy and awareness

As a unified community, we can achieve anything if we have a vision and work together to change the future of all those affected by SMA.

Be sure to follow our Facebook, Twitter and Instagram pages for live updates, and check back next week for a summary of Hill Day and Leadership Summit activities.