The Adult Congenital Heart Association (ACHA) has funded six research grants to advance the science of congenital heart disease (CHD) in adults. With the advent of this new ACHA program, the organization aims to improve the lives of CHD patients and future generations in partnership with medical professionals.
“If it were not for medical research and innovation, adult congenital heart disease (ACHD) would not exist as a field,” says Jamil Aboulhosn, MD, FACC, FSCAI, ACHA Medical Advisory Board Chair, noting that in the textbooks of the early 20th century, there was barely a mention of CHD. “There are so many questions that are still unasked and unanswered in this field and it is imperative that we do our part to move things forward, and that can only happen through research and innovation.”
On Tuesday, March 5, nearly 200 fellow advocates will be on Capitol Hill meeting with their Members of Congress as part of the 2018 Congenital Heart Legislative Conference.
They are asking their lawmakers to support research, data collection and awareness activities related to congenital heart disease (CHD), and to support the more than 2.4 million Americans living with the lifelong consequences of congenital heart disease.
We need you to participate from home!
We are excited to launch our new Online Community, which provides our members with opportunities to connect with one another and ACHA! All information from the previous Discussion Forum you've known for years has been transferred to our new Online Community, including usernames and passwords.
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.