We are so excited to share our brand new fundraising campaign with our members and the congenital heart disease (CHD) community! We hope you will join us this year as we walk for the 1 in 100 children and adults impacted by CHD across the country.
In 2019, we will be introducing Walk for 1 in 100 in 14 communities to raise money for outreach, education, research and more. Our events were created to empower all of those living with CHD, their loved ones, and the medical community that cares for them.
Today, there was final passage of the Congenital Heart Futures Reauthorization Act in the House of Representatives! ACHA’s sincere thanks go to Representatives Bilirakis and Schiff, Senators Durbin and Young and their staffs, for their tireless work that enabled passage of the bill. The bill now goes to President Trump for his signature.
On Friday, a Texas judge ruled in Texas vs. United States, a case challenging the constitutionality of the Affordable Care Act (ACA). The court ruled that the entirety of the ACA is unconstitutional because the 2017 tax reform law eliminated the individual mandate tax penalty. The case is expected to be appealed immediately and will likely go to the United States Supreme Court for a final ruling.
I am pleased to kick off this month’s newsletter by sharing some exciting news! As I announced in our April issue of Heart Happenings, ACHA is on schedule for our next National Conference in 2020. This is our premier event, with top-notch educational sessions—given by the best in the congenital heart disease field—and ample social opportunities for CHD patients, families and loved ones, medical professionals, and researchers.
Every year, Congress must pass appropriations bills that set the funding levels for all federal agencies and programs. We are most interested in the bill that funds the Departments of Labor, Health and Human Services and Education (the Labor-HHS bill), since it decides how much money will be spent on CHD-related research and surveillance activities at the Centers for Disease Control and Prevention (CDC) and National Institutes of Health (NIH). We need to advocate for the programs most important to us to ensure that their funding levels are maintained.
The Congenital Heart Futures Reauthorization Act Approved by the Senate Health, Education, Labor and Pensions Committee
Earlier today, the Senate Health, Education, Labor and Pensions (HELP) Committee held a markup on the Congenital Heart Futures Reauthorization Act (CHFRA). The bill was unanimously approved by the Committee and moved a step closer to consideration by the full Senate.
We need your help! We need all ACHA Congenital Heart Disease (CHD) Activists (advocating for those affected by CHD) whose Senators serve on the HELP Committee (list below) to call them and ask them to support the bill in the upcoming markup on Wednesday. If you live in one of the relevant states, please call your Senator today!
The only organization in the country that specifically serves adults with congenital heart disease (CHD), the Adult Congenital Heart Association (ACHA) has named Kristin Edwards Community Development Coordinator for Houston—one of six and the final region ACHA has targeted for expansion in 2018. In this role, Edwards will plan, implement, and lead local program and development initiatives, including patient and family education and support groups, CHD conferences, fundraising and volunteer activities, and overall community outreach.