Have you ever considered putting your talents to work as an ACHA volunteer? Through May 8, we are accepting applications for ACHA's signature volunteer programs: the Heart to Heart Peer Support Program and our Patient & Family Advisory Board (PFAB). We encourage you to click here to learn more about our needs and the application process and your options for giving back to the ACHD community!
Volunteer roles are available to adults with CHD and to immediate family caregivers. Today we are sharing more about two current volunteers with our programs. PFAB Member Jaclyn Drager is the mother of a child with CHD, and Peer Mentor Courtney Fogarty is an adult with CHD. Read more about their journeys and why they became ACHA volunteers in the Q&A below.
If you are moved to apply for either of these opportunities, please click these links for the applications:
How has ACHA been a part of your CHD story?
Jaclyn: I learned about becoming a PFAB member through Facebook. My daughter Lucy, who has a CHD, is only two years old—so I wasn’t sure if an adult organization would be a good fit just yet. But it has been such an amazing experience to be a part of ACHA. CHD can be very overwhelming as a parent. You can feel very alone, and ACHA has allowed me to become part of a community of amazing people who understand what our family and Lucy have and will go through. I can’t tell you the kind of comfort that brings.
Courtney: My cardiologist recommended looking into ACHA as I was preparing for my first open heart surgery. When I read about the Peer Mentor program, I knew right away it was something I could benefit from and I was able to connect with a Peer Mentor a few months before my surgery. Even with an amazing support system of family and friends, preparing for my first major surgery was overwhelming mentally and emotionally and being able to speak with someone who had been through a similar experience was very comforting.
Why did you decide to volunteer and what has your role meant to your journey with CHD?
Jaclyn: I decided to become a PFAB member because after my daughter's diagnosis, I wanted to learn as much about CHD as possible. She will be living with this for the rest of her life and while she is only two, being a PFAB member has allowed me to gain so much insight and education to prepare for her future. ACHA has all of the resources available to educate and provide support for all those affected by CHD.
Courtney: The biggest thing for me as a Peer Mentor is I don’t want anyone to feel alone in their experience. Living with a CHD gives us such a unique perspective on life, but it’s also hard to put to words what it’s like to live with a lifelong condition and all the uncertainty that comes with it. I was diagnosed at birth so I’ve always been aware that I had a health complication which made me realize early on how fragile life can be. I believe it’s so important to be kind to one another and to live every day doing what makes you happy.
Share a meaningful memory about your experience as part of this program.
Jaclyn: This program has taken me out of my comfort zone. For the past two years, in honor of Heart Month, I have formally requested proclamations recognizing Heart Month from my state representatives and the Governor of Ohio. This year, I was honored to receive two: one from my State Representative and a second from the Governor's office. This was a particularly meaningful achievement, as my objective is to contribute in any capacity to raise awareness for CHD.
Courtney: In a recent match, I shared something that I’d been dealing with even a few years after surgery and it really resonated with them. I noticed how being vulnerable and open in sharing my story created a positive shift in our relationship where there was instantly more trust. It seemed to help them feel validated in what they were going through emotionally and they were more comfortable to talk about their experiences.
Why would you recommend others in the CHD community apply to volunteer?
Jaclyn: I would recommend becoming a PFAB member because you truly get to be part of a family that is caring, supportive and fun! We come from all parts of the country with different views and beliefs, but we have one commonality which bonds us together. I look forward to our PFAB meetings because even though we meet on Zoom, you get to know one another and each other's stories. It’s fun to check in and see if someone had something great happen to share since our last meeting. The people on the PFAB are amazing who have great ideas and truly care about spreading awareness for CHD and it is an absolute honor to be a part of it.
Courtney: The CHD community is a diverse group of individuals, and you never know how sharing your story and being a source of support may help someone in their heart journey. It’s an amazing opportunity to give back and support others while building trusting relationships and learning more about yourself.