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PEDIATRIC CONGENITAL HEART ASSOCIATION INC

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Community Stories

15 Stories from Volunteers, Donors & Supporters

Jennifer W.9

Volunteer

Rating: 5

Pediatric Congenital Heart Association meets the needs of CHD families and patients throughout the lifespan. They encourage cooperation and transparency, and work tirelessly to advocate for us all!

jdougherty

Volunteer

Rating: 5

PCHA is helping me help my son to reach his greatest potential. PCHA's advocacy programs are helping to make sure our leaders understand the impacts of heart defects and what families dealing with heart defects need. The support programs of PCHA help our family stay up to date on the latest information and research and provide support when we need it. By connecting with other families, we are better able to care for our son and he knows that he is not alone. We are proud to be conquering congenital heart defects with PCHA!

1

Volunteer

Rating: 5

No one wants to learn that their precious child has something wrong with their heart. To hear that there isn't a cure, and they will need multiple open-heart surgeries and require lifelong care is devestating. Then you are introduced to the reality of statistics, lack of research funding, and for many, no cure.
This organization has allowed me to use my voice, to work alongside others who will fight for quality of care, advocate for all patients, and help support families. We all work alongside together and will never stop trying to conquer CHD.

Jennifer W.2

Volunteer

Rating: 5

A wonderful organization for support, advocacy, and education for the ENTIRE CHD community!

Volunteer

Rating: 5

Wonderful organization that empowers families and kids affected by CHD! They are in tune with their community and well connected with those that can help further their mission to conquer CHD.

Board Member

Rating: 5

I am a mother of a child with a complex Congenital Heart Defect (CHD). My desire, since we received our son's diagnosis prenatally 9 years ago was to find a community that would: provide hope, support, education, resources to empower families, along with advocacy efforts to support CHD research. PCHA does all of this by collaborating with patients, parents, providers, and partner organizations. I am very fortunate to serve PCHA as a board member and volunteer. I truly believe that together, we will Conquer CHD.

1

Volunteer

Rating: 5

PCHA is truly helping to conquer CHD. As an adult living with CHD, they have listened to what our needs are and are working to make PCHA a "one stop shop" for the CHD community. Everyone is very responsive and easy to reach. I am honored to volunteer for this great organization!

1 CHDHeartMom

Volunteer

Rating: 5

My son was born 7 years ago with a Congenital Heart Defect(CHD). PCHA has given me a place to connect with other families so that our family is not alone in this journey. Our state chapters deliver care kits to local children's hospitals and provide face to face and online support to families. PCHA also provides invaluable training and experiences to advocate for my son and others with CHD on both a local and National level. They are leading in the field of CHD advocacy and hospital transparency. With this amazing organization, we are conquering CHD!

Mary K.1

Volunteer

Rating: 5

The Pediatric Congenital Heart Association is a one stop shop for Congenital Heart Disease. We value their resources and look forward to the local chapter events. PCHA Has shown my CHD warrior that he is not alone and has given him self esteem and confidence when advocating for his own health.

1

Volunteer

Rating: 5

When my son was born we had no idea what he would face in those first few days, weeks, or years. We had no idea that we were in this for a lifetime. When I found PCHA I was sitting next to his hospital bed just seeking knowledge about the new world we were a part of. The resources PCHA helped me to educate myself and ultimately led to me dedicated my life to advocating on his behalf. It's been almost 3 years volunteering with this amazing organization and so many amazing opportunities have come through them. We've met some of the most brilliant and influential medical minds in the field, met with our nations leaders, and connected with countless inspiring families. We want to continue to work with this organization that helped us find our voice and make a difference. Over the last 3 years I have watched this organization grow exponentially and continue to give knowledge, a voice, and hope to patients, parents, and medical professionals alike.

2

General Member of the Public

Rating: 5

I'm a Heart Dad and while there are lots of us around the country, it's hard to connect when you don't really use social media. PCHA, and especially local chapters and their events, give me the chance to meet and talk to other Heart Dads. I just want to make CHD go away for my kids, and not being able to fix it is hard. I'm appreciative of all the resources from PCHA that I can dive into and feel educated and positioned to advocate for my child's best care.

3

Volunteer

Rating: 5

PCHA is an organization that helps families all across our country learn how to advocate. The PCHA is a comprehensive organization that brings people together impacted by congenital heart disease. In the years that I have been volunteering with the PCHA I have seen them grow leaps and bounds. By raising awareness in the CHD world through advocacy, transparency and education the PCHA is reaching a part of the community in need and helping them navigate the journey.
My daughter loves the opportunities she has had through this organization to share her story with lawmakers in DC and locally. I am thankful for the work they are doing in the medical field to create better transparency.
So many wonderful things happening in one organization to move the needle.

3

Volunteer

Rating: 5

PCHA is a one-stop shop for patients with CHD and their families. As a parent of two CHD patients, 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. PCHA 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 PCHA, as my young children age, transition to adolescent and adult CHD providers, and eventually manage their care solo. PCHA supports the CHD patient over their lifetime and that's something none of us can go without. It is my pleasure to volunteer with this organization!

3

Volunteer

Rating: 5

I learned about PCHA after attending a legislative conference in D.C. and have been hooked ever since. The amazing work they do with hospital transparency, advocating for CHD causes, educational materials and now support is truly top notch. I'm very proud to be a volunteer with PCHA because they have all the tools needed to Conquer CHD. Exactly what the CHD community needs

3

Professional with expertise in this field

Rating: 5

I first began working with PCHA in 2013. What started as a small group of motivated parents has grown to an amazing national organization reaching 100's of thousands of people. I have watched this organization change the way the doctors work with the patients and families. I have also seen this organization change the face of a parent from worry to hope. In fact, it continues to give me hope as I navigate the CHD journey with my own child!