By Hilary Rosselot
Red tape should never stand between a child and their treatment. But sometimes they face burdensome, unnecessary challenges when getting care in another state.
That’s why we’re urging lawmakers to support the Accelerating Kids’ Access to Care Act. Every child deserves the best care—regardless of who they are, where they live, or their family’s income.
The National Fragile X Foundation is one of 215 organizations dedicated to improving the health and well-being of children – including children impacted by pediatric cancers, rare diseases, and complex medical conditions.
We recently signed on to a letter strongly supporting the Accelerating Kids’ Access to Care Act (S 2372 / HR 4758) (AKACA). Once enacted into law, this legislation will help reduce the time it currently takes children covered by Medicaid or the Children’s Health Insurance Program (CHIP) to access specialized care when providers in their home state cannot address their care needs.
This Act has officially been introduced and has bipartisan support. We will keep you updated as things progress. Thanks, Advocates, for tirelessly advocating for legislation that impacts our Fragile X community and the broader community!
Click to read the final Support letter:
about
Hilary Rosselot
Hilary joined the NFXF team in 2019. Prior to joining the NFXF team, she worked at the Cincinnati Fragile X Research and Treatment Center for over five years. She has experience as a clinical research coordinator across many types of clinical trials and served as the clinical research manager for the Cincinnati program. She earned a bachelor’s degree in psychology, a master’s, and is a SOCRA certified clinical research professional (CCRP). She enjoys time with family and friends, a great book, a strong cup of coffee and, of course, a good laugh!
learn more
Read the House and Senate Press Releases on this important proposed legislation:
The ABLE Employment Flexibility Act
The ABLE Employment Flexibility Act (H.R. 4672) permits employers to contribute to an employee’s ABLE account instead of a 401(k) – including an employer’s match. By saving it in the ABLE account it will not adversely affect most means-tested federal benefits.
An Update on Our Advocacy Efforts
An update on our advocacy efforts, including Advocacy Day 2022 and key legislation we are currently supporting.