Welcome to Susan's Walk for 1 in 100
When our daughter was born with a congenital heart defect, we were told her chances of living to see her 1st birthday were slim.
She has just celebrated her 32nd birthday, and with gratitude and celebration for every one of her birthdays, I am going to walk 32 km.
I would love to have your support.
I’ll be walking on Valentine’s Day, the ultimate heart day, during Congenital Heart Awareness Week (Feb 7 – 14), raising funds for the Adult Congenital Heart Association.
I’m excited this year to be walking as part of ACHA’s Walk for 1 in 100. This new walk series has 14 walks in 2019 across the country – but if we don’t live near one of these walks, any of us can walk anywhere, anytime, in our own walk!
I’m walking in support of ACHA because of its commitment to improve and extend the lives of everyone born with congenital heart disease, or CHD.
CHD is the most common of all birth defects, affecting about 1 in 100 babies born.
We are still tragically losing far too many babies, children, teens, and adults to this disease. The CHD community grieves with every single loss, and we continue to carry each infant, child, teen, adult, in our hearts.
Thanks to the tremendous innovation in heart surgeries and medical treatments in the past few decades, 90% of babies born with CHD are now living to adulthood. In fact, for the first time ever, the majority of Americans living with CHD are now adults.
These successes have had some unforeseen consequences.
While we used to think that many heart defects were “fixed” with surgeries, we have learned from the adults now living with CHD that this is never the case. Rather, CHD is a lifelong disease, sometimes involving other organ systems. We have learned that every adult with CHD should be in lifelong specialized adult CHD (ACHD) care. And yet, due to lack of awareness, only 10% of the roughly 1.4 million adults living with CHD in the U.S. are in ACHD care.
We are learning from these pioneering adults that there is far too little research and data; their dedicated ACHD cardiologists tell us they need more research and data to guide their decisions on best care.
I want my daughter and everyone born with CHD to have a long lifetime of birthdays to celebrate, and I believe supporting ACHA is the best way I can help make this possible.
Important ways ACHA uses your donations to fulfill its mission to improve outcomes for everyone born with CHD:
• Research: There is a tremendous lack of research to guide adult CHD care. ACHA has long been a strong advocate, supporter, and partner in ACHD research, and now, beginning in 2019, we are also funding important ACHD research.
• Education: ACHA has strong patient-centered education programs available to everyone, helping people learn how to best manage their health.
• Accreditation: The recently unveiled ACHA ACHD Accreditation program set standards for ACHD clinics, with 26 clinics currently accredited and many applications in process. This is improving care for adults with CHD.
• Advocacy: ACHA is focused on advocacy and public awareness around the need for everyone born with CHD to stay in lifelong high-quality specialized ACHD care and to have access to that care, along with the need for research, surveillance, and awareness.
• Local: With regional conferences, local events, and local regional staff, ACHA is providing information and support to more people where they live.
• Ambassadors: Our volunteer Heart to Heart Ambassadors are trained volunteers, offering peer-to-peer support and guidance.
All of these initiatives will lead to longer, healthier, fuller lives for people living with CHD.
They can only happen, of course, with funding.
There are now approximately 1.4 million adults in the United States living with CHD, and this population is growing by about 70,000 each year. As this adult population grows, so do the needs.
As the only national patient organization focused on adults with CHD, ACHA is working to ensure that the specialized care, knowledge, and research that adults living with CHD need will be available to them; likewise, ACHA is making sure all of this will be ready for the babies and children now living with CHD, when they become adults.
In serving on ACHA’s Board of Directors, I witness first-hand the depth and breadth of important work ACHA does, the dedication of ACHA’s staff and volunteers, and the careful stewardship and use of funds donated for this work.
I invite you to support ACHA along with me, in sponsoring my walk on Valentine’s Day.
So together, we can take 32 kilometers of steps toward improving the lives of everyone born with CHD.
With much gratitude, on the part of everyone with CHD and all who love them,
Thank you for visiting my Walk for 1 in 100 personal fundraising page. Please consider making a tax deductible contribution to support my fundraising efforts on behalf of The Adult Congenital Heart Association. All funds raised benefit CHD research and programs. I appreciate your support!
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