The Lay of the Heartland, Part Three: Don’t Jump

I have a friend who might guest blog when she’s ready about working with the American Heart Association to change things at the local level and from the inside out.  I respect her perspective and have invited her to write about it here, but for me the worst of the worse for the the American Heart Association is Jump Rope for Heart.

There are over 32,000 schools doing Jump Rope for Heart this year.  That means a conservative three million kids who are going to get messages about Congenital Heart Defects, which is good, but that also means three million little kids and tens of thousands of educators and millions of American parents who are going to think they are helping kids born with heart defects by asking millions more grandparents, aunts, friends, church members, and neighbors to pledge for their participation at the Jump Rope event at their school.

I don’t get angry easily, but this makes me fume because this campaign essentially pulls on the heart strings of the smallest children and the best intended teachers and principals to help kids like MY kid, when less than 1% of the money they raise will have any effect on CHD at all.  Where does that money go?

  • Advertising and fundraising
  • Awareness and Education about childhood obesity and adult onset heart disease
  • Research for adult onset heart disease

This particular situation puts me in mind of the recent Susan G. Komen/Planned Parenthood debacle. Komen was providing roughly $650,000 for mammogram screens for low income at risk women and millions of women were outraged when that funding was withdrawn.  If each outraged woman gave one dollar to that fund, they could have tripled or quadrupled the budget.

Right now, the AHA spends roughly $5/CHD patient in the USA. Two million kids and adults with CHD split $10 million in research funds, but keep in mind they’re really only splitting up a fraction of that because much of that $10 million was spent on adult onset coronary artery disease research like stents and cath lab technology that was never intended for CHD patients might be recycled by pediatric and adult congenital cardiologists. So if each of those three million plus kids raised only $5 for kids with CHD then they would have surpassed the current AHA funding levels. Trust me, Jump Rope For Heart brings in good money, so why isn’t it going to the kids whose stories prompt high participation and effort from their peers?

I recently was asked by my sister-in-law Sarah to explain this to my niece Lily’s principal.  I did, and I suggested he have his own Jump Rope event and take one of three paths instead of working with the American Heart Association:

  1. Have their PTO/PTA collect funds and use them for the school’s own PE program to promote health and fitness.
  2. Donate to the Children’s Heart Foundation that fund ONLY congenital heart programs.
  3. Donate to the Children’s Heart Institute at our local children’s hospital.

Lily’s principal has said that 2012 is the last year his school will do Jump Rope for Heart.  There are still over 32,000 schools who will participate, and there are still over three million kids who will join in, but this was one small hop on our way to stopping a big deception.  You can see a copy of my letter here.  You can see a copy of the letter the AHA sent that shows the 10 million or 1% and their trickle down justification here:  Knowledge Discovery – Cardiac Kids Jan10. I redacted my friend’s name who received this letter, but that is the only thing that was changed.

1 Comment »

  1. Thank you for this post. I recently encountered this myself. I have been a supporter of the AHA since my son was born with a CHD in 2004. We have raised thousands and thousands of dollars for them. They allowed us to designate our funds to “pediatric research” but it is not limited to CHD research. As I’ve begun to ask more questions I am finding that I don’t like the answers. When I requested information specifically about CHD I got basically the same letter that your friend received. This year when I received a letter from a friend asking for donations for jump rope for heart with pictures of CHD kids and urging me to “help kids like these” I called to find out if the funds were at least designated for pediatric research. Nope, it’s a donation to the general fund. This year we participated in our local CHD Walk instead and raised money for The Children’s Heart Foundation. I am encouraging all of my heart friends to do the same. However, I also feel that if the AHA is going to use our kids, we have a right to use them as well. Some local offices are more supportive of CHD kids than others, and when they are willing we should use their voices to partner on things like pulse oximetry and national data collection. I share your frustration with them, but I don’t want this to become an “us versus them” situation. Ideally we will be able to further educate those at the AHA about CHD and form a mutually beneficial relationship.

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