Tuesday, November 30, 2004

Non-profit politics

First, the background on the politics. I am still sorting through it, I'll fill you in on what I know. Basically, there is one powerhouse non-profit when it comes to heart issues: the American Heart Association. Many other non-profits have had issues with their focus being entirely on white men. Me, being female, and having a kid with heart disease, I've joined some other organizations that have emerged. I also co-chair a committee for the AHA on cardiovascular health in the young. ( I'm just beginning to tune in to the undercurrent and big business of saving people from heart disease) WomenHeart, a patient advocacy group for women with heart disease, in partnership with the AHA and the National Institute of Health, developed the Red Dress Campaign, using the red dress symbol in a manner similar to what the pink ribbon is to breast cancer. Last year, AHA pulled out of the Red Dress Campaign, lauching their own campaign: Go Red for Women. Well, that's great, same message. The more the merrier. But then today, when a major project came together, I am beginning to see how ugly it can be. Two WomenHeart reps, and my friends, appeared on the Jane Pauley show this week, both discussing the importance of making the public aware of their personal risk for heart disease. Meet two of my fellow WomenHeart spokeswomen: A heart attack killed Wanda's sister, but she still didn't realize that she was at risk - until she had a heart attack of her own at 31 years of age. Then, she had a second heart attack only a week later. Today, her heart is working at only 25% and she is on permanent disability. She's here today, on what she says is now her "life's mission," to spread the word about women and heart disease. Wanda's story is just one of many profiled in Glamour magazine's ongoing feature about women and heart disease. Aggie also had several heart attacks and suffers permanent damage. She was on another show about renewing wedding vows after a serious illness. She and her husband won a surprise second honeymoon after appearing on the show. Well, Jane Pauley's producers worked with our organization for 6 months in preparation for these two shows. Imagine our surprise today when the show aired, and all plugs were given to the American Heart Association's Go Red for Women campaign. Not a mention of WomenHeart. Not even on the site. The producers actually contacted WomenHeart, interviewed and filmed a bunch of us (I got cut), and then didn't credit us. AHA had refused to have any connection to WomenHeart whatsoever. Hummmph. On a happier note, I am proud to call Wanda and Aggie friends. We are part of a group of women in our 30s, all with small children, doing advocacy work for women and heart disease. Aggie will also be featured in the upcoming print campaign that I'll be in with Lily.


  • At 12/02/2008 08:04:00 PM, Blogger Rocky said…

    That show and Wanda in particular SAVED MY LIFE.... I have been trying to find her for this whole time I saw it in RE RUN in June of 05 onlyto have aheart attack just 2 weeks later... OMG I would love to just thank her sorry YOu didnt get the credit you where looking for.... I pay it forward all the time and Spead the word I Know that I have saved One life as well so Please let her know that she is my Hero...I attemped to send her flowers and wishes... all I can say Is I hope she is well and GOD bless all of you and what you do Debbie Ann Schneider Heart attack survivor 6/ 2005 LOVE LOVE LOVE YOU .....If you could get her my name and number I would love to talk and thank her Myself 718 323 8282 or


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