We first met this group when we were in-patient with our newborn who was having emergency heart surgery. It was a time of chaos and when we received the conquering CHD bag it provided a little bit of steady ground/hope/reliable information since the doctor's/surgeons were too busy to explain all that was happening at the time. The bag had items that were helpful while we were in-paitient and helped us to find the online group what has been so helpful. When you have a child with a specialty conditions it can feel lonely and hard to find others who understand what you are going through. This group helped to provide the priceless gift of connection to community with others who could relate. I final decided to give back and have joined the board so that I can help give others that little bit of hope that I felt in that moment.
Conquering CHD has been apart of our life since we found out our son had a prenatal CHD diagnosis. We were handed a kit at a prenatal appointment with loads of information to advocate for our son and ask questions of our care team, ways to connect with other families in the area, and comfort items.
Volunteering with this organization, alongside patients, parents, spouses, caregivers, and professionals has been extremely rewarding. The organization is forward thinking and looking to improve the lives of all those effected by CHD, while we all strive to conquer the most common birth defect.
Volunteering for this organization has been indescribable. The community that has been formed has impacted so many individuals living with CHD. Conquering CHD's mission is to create visibility and empower all impacted by CHD through raising awareness, knowledge, community, and research. As a CHD patient myself, I have found so many helpful resources that I wish I had known about earlier.
Conquering CHD is a one-stop shop for patients with congenital heart disease and their families. As a parent of two CHD patients and a Patient Advocate, I am able to access local support from other CHD families, education on the latest advancements in cardiac treatment and research, as well as participate in legislative advocacy.
Conquering CHD has given me the resources to best advocate for my children and their care and has connected me to a national network from which to learn from and grow with. My family will grow with Conquering CHD, as my children transition to adolescent and adult CHD providers, and eventually manage their care solo. Conquering CHD supports the CHD patient over their lifetime and that's something none of us can go without.
Volunteers in Florida provide much-needed support and comfort during difficult times. They host events to celebrate the good times. They provide education and resources when patients and families need it most. They are truly changing the landscape of congenital heart disease, one patient at a time!