Posts Tagged ‘TCHIN’

A Common Goal: Ellen Weiss, Chair of the National Congenital Heart Coalition

April 7, 2009

I recently had the chance to interview Ellen Weiss, the Chairperson of the National Congenital Heart Coalition by e-mail. As head of the umbrella group that brought diverse Congenital Heart Defect (CHD) groups together for Lobby Day 2009, Ellen was our leader as we lobbied Congress for passage of the Congenital Heart Futures Act.

How did you become a Congenital Heart Defect advocate?

Soon after the birth of my daughter in 1992, I realized that there was a significant need for increased funding of congenital heart disease research worldwide. I decided to volunteer for the Children’s Heart Foundation (CHF), the only national organization that exclusively focuses on funding CHD research.  CHF ensures that over 75% of every dollar donated to the Foundation goes to program services which is funding research and awareness. I started as President of the Florida Chapter and focused on grassroots fundraising for CHD research and building local awareness. After attending a National Heart, Lung and Blood Institute (NHLBI) conference in 2006, I learned that there were other critical needs – increased public funding of CHD research and national awareness.  The Children’s Heart Foundation also understood that advocacy and awareness would lead to increased research, and ultimately, will improve outcomes for the entire CHD community. They offered me a position on the national staff where I handle both Chapter Development and Advocacy.

There are a lot of groups that advocate for Heart Defect Survivors and CHD medical research. What brought so many together to work for one common goal?

The National Congenital Heart Coalition (NCHC) was formed to create a powerful, united voice for all those affected by Congenital Heart Disease. Amy Verstappen, President of the Adult Congenital Heart Coalition (ACHA), approached the Children’s Heart Foundation (CHF) with the idea soon after we had a meeting with the Joint Council of Congenital Heart Disease (JCCHD) in 2007. Inspired by Amy’s vision of an alliance to work on collaborative projects and to improve long term health outcomes, the CHF, the ACHA and the Congenital Heart Information Network (CHIN) formed the NCHC with the mission to prevent future CHDs and to improve and prolong the lives of all those currently affected by Congenital Heart Defects. We worked on our first project, the Congenital Heart Futures Act, with NCHC members and national CHD organizations, It’s My Heart and Mended Little Hearts.

Describe what you feel would be the impact of the Congenital Heart Futures Act.

The Congenital Heart Futures Act will impact every aspect of the CHD community from patients, families, researchers, care centers, researchers, all health care providers, and the general public. On a practical level, the Act will establish the essential information foundation for the disease by creating a national patient registry, will significantly enhance research and will provide needed education and awareness. Overall, the Act will transform the perception of the CHD community from a disease from a ‘birth defect’ to a ‘lifelong chronic disease.’

What would you say has been your best experience while getting the Act introduced?

My best experience was elevating the CHD platform to the national level. For decades, Heart Defects have not received the national awareness and has been dwarfed by ‘traditional’ heart disease as well as other childhood illnesses. With the introduction of the Act, we are beginning to receive the national attention and awareness that is proportionate to the prevalence and seriousness of the disease.

A second significant experience while getting the Act introduced was working in collaboration with the leaders of the major CHD organizations and uniting the major CHD organizations in our common cause. For many years, several CHD organizations worked in parallel, but not in concert with one another. The National Congenital Heart Coalition provided the forum for the organizations to work together on a project while increasing the overall impact of our organizations.

Was there ever a moment when you just felt that this would never happen?

The National Congenital Heart Coalition realized that if the Act was unprecedented. Nevertheless, we knew that we had an extremely strong case for creating, introducing and potentially passing legislation. During the process of creating the legislation, we felt challenged by both the changing political environment and extraordinary economic times.

As a Heart Mom involved at a national level, is there any advice you can give to other Heart Moms?

On a personal level, I am very encouraged for other Heart Families. Now, more so than ever, children born with CHD in this country have access to the best care available worldwide. I urge families to view CHD as a chronic, lifelong disease and encourage them to take full advantage of all available resources in order to feel in control of their individual situation. If appropriate, I also encourage families to give back, when possible, to the CHD community. It is only in this manner that we can make substantive changes with the disease.

Look forward into the future. Assuming there are no major changes in the bill, what do you think the CHD world will look like thirty years after the passage of the Congenital Heart Futures Act?

With the passage of the Congenital Heart Futures Act, we would see substantial changes in the CHD world. The first change would stem from the basic infrastructure of information that would be made available with the National Patient Registry. This repository would provide researchers, clinicians, and patients with the basic disease information needed from a population perspective.

Secondly, there would be a major expansion in the research focus to the adult CHD population. Over time, research has gradually shifted from survival to improving diagnoses and treatment. Research would focus on improving the quality of life for the increasing CHD population including critical genetics research.

Third, the Act will educate the broader medical community as well as the general public on Congenital Heart Defects so that the facts become as basic as the other commonly known diseases.