The CHD Coalition is the largest organization in Northern NJ dedicated to reducing the impact of congenital heart disease (CHD). But we’re also mothers, fathers, family, and friends of people who have had their lives changed forever by this relatively unknown disease. Together, we’re united to make a change.
Meet Our Team
My son Michael was diagnosed with Tetralogy of Fallot in utero, at 20 weeks – early enough that the law still allowed us a choice. Without ever looking back, and with the help of our new friends at the CHD Coalition, my wife Cathy and I found the strength to endure a rough road of surgeries and hospital stays, and to adapt the vision of our family’s future to one that is permanently altered by our son’s unique heart.
The vision and courage demonstrated by the CHD Coalition’s leadership have been an inspiration and are helping to stretch me beyond the things used to seem so all-consumingly important. Like my day job as the CTO at a data analytics company, and my weekend stress reliever of playing in a rock band. I’m proud to a part of the CHD Coalition’s fundraising efforts, and I’m humbled to be associated with these incredibly strong and generous people. By working to bring similarly affected families together – for support and fundraising – we are making all of our lives better, united for change.
A day does not go by that I am not incredibly thankful for having educated doctors that immediately identified Olivia’s distress and performed miracles on a little baby. I am truly inspired by Olivia’s strength, her passion for life, and her loving personality that brings a smile to everyone she encounters. She continues to amaze us with everything that she does. She is fearless and a champion.
I am honored at the opportunity to give back to the CHD Community and to help advance the Congenital Heart Defect Coalition mission.
The work by all of the doctors, nurses, and support staff really touched me and my family. Entering the CHD world isn’t something you choose or can prepare for…nothing can prepare you for the news that your baby has a problem with his/her heart, but there are people along the way to help support the families that are going through this journey. I want to use our experience to make an impact with other families that also get thrust into our world. I would be naive to think that Matthew would be alive today without the parents, families, and friends who fundraised for research before us. I believe it’s my turn to try and help improve the lives of those living with CHD and those yet to come.
She is now a lovely young lady in college who enjoys swimming, photography and of course, spending time on the latest social media outlet.
Throughout the years I have been involved with different local heart support organizations (both on the receiving and giving sides of comfort – and I much prefer giving). I am so thrilled to be a part of the CHD Coalition. I hope the work we can achieve will bring comfort and education to CHD families in need, that we can help fund worthwhile CHD research, and that we can celebrate medical successes and advancements that will help to improve the quality of life for those with congenital heart defects.
It was through Mickey that I became aware of the severity of congenital heart defects, yet like most people I was not aware of the condition up to this point. This was at a time when I was ready to start giving back to the community. After meeting everyone involved with the CHD Coalition, it was clear that this is a cause that I wanted to belong to and dedicate my time.
I have been fortunate to belong to several organizations that serve the CHD community. For 10 years, I was the Head Nurse of the Hope with Heart camp in New York. The residential camp program allows children with a moderate-to-severe CHD a safe place to experience the joys of childhood and friendship. I am also a member of the Heart Care International Team and the Gift of Life International Team. Both medical mission teams travel to developing countries to bring education, intervention and surgery to those children & families affected by a CHD. The ultimate goal of both organizations is to help build sustainable pediatric cardiology programs where there is none. I have been privileged to be part of over 60 mission trips spanning 20 years.
Since 2007 I have had the honor to be in a leadership role for a non-profit organization devoted to improving the quality of life for all those affected by a CHD. The group now is called the Congenital Heart Defect Coalition (CHDC). It has been a privilege to work with such amazing, dedicated and courageous individuals in our mission to change the future of CHDs. The heart warriors and their families have become "My Heroes"!!!!
I have been married to my husband Glenn for 40 years, and we have three daughters. Our oldest daughter has Type 1 diabetes and is dependent on an insulin pump for survival. Our youngest daughter has multiple learning disabilities and attended a specialized school and is now involved in several special needs adult programs. The world of "special needs" is not unfamiliar to me.
It wasn’t until Anthony was in his twenties that we found the CHD Coalition. For most of his life we never met any other families with a CHD so it was a blessing to find this group of parents and children who know exactly what we are going through. It is a privilege to work with such a passionate group of people all working towards the same goal.
Before I became a stay-at-home heart mom, I was a retail sales manager for a very high-end apparel brand. My career success depended on relationship building, outreach and marketing. Today, I consider myself lucky to be able to leverage these skills with the CHD Coalition to help other parents who have the same concerns and challenges with their children. Together we spread awareness, give support, and raise funds for research. I could not be more proud to be part of a team that does such important work!
Even though Jack - now two and a half - has had three open-heart surgeries related to his valve, he is a happy, sweet little boy. He loves cars, trucks, The Incredibles and (we hope) his new baby brother.
We made it through the first months of Jack’s life because of a gifted medical team, fantastic doctors, and a support system that helped us through. Not everyone is so lucky and we are so thrilled to be able to give back through the CHD Coalition.
I learned about the CHD Coalition through one of the nurses in my practice, Mickey, who asked me during a visit if I would consider joining and to offer peer-to-peer support from the perspective of an adult CHD Warrior. I immediately thought this was the perfect way to give back to a cause that, for lack of better words, was close to my heart. I am truly honored and thankful to not only be able to work with a group of people who are inspiring and supportive, but also provide comfort to families affected by congenital heart disease.
It was a whirlwind that first couple of weeks of Daniel’s life, seizures, mistakes made in the NICU that caused a burn from the inside to the outside of Daniels body, and then a time where we were told our son was not coming out of a medically induced coma and that surgery might not even be an option. Things soon changed, Daniel did wake up, went on to have 3 open heart surgeries and is now a happy boy who enjoys Lego’s, Dolphins and Whales and smiling with a big smile that could just melt your heart.
Right around Daniel’s first birthday, Ken and I decided to do a personal fundraiser to raise money for CHD research, which became a yearly occurrence. After the 3rd Tricky Tray held in our back yard, which had 150 people in attendance and raised over $15,000, we decided it was time to take the next step and start a 501c(3) organization. I am honored to be one of the original founders of the CHD Coalition, and I am so proud on what the organization and its volunteers have accomplished over the past 10+ years.
Today he is 14 and loves everything about race car driving, especially Formula 1. He also spends time riding his bike, running for the school track team, and is a member of Boy Scouts. I am involved with the CHD Coalition so I can help make information available to other CHD families who find themselves thrown into the world of CHD. Every child’s heart is different, but through the coalition, we do not have to be alone. My goal is to help the coalition support our families and raise awareness for CHDs.
Help us make a difference
We lead fundraisers, connect with hospitals, and spread the message of hope—but we can’t do it without the generous support of people like you. By donating or volunteering, you can change the lives of families and children across the globe.