Duncan Cross is at it again; this time he’s got a huge bone to pick with the Crohn’s and Colitis Foundation of America (CCFA). The nation’s health care system is being renovated, everything is on the table, and practically everyone in Washington DC is putting their two cents in. The only group not fighting to get into the debate is the International Association of Airship Navigators.
So what’s Duncan upset about? The CCFA wants their members to support a Senate bill that will promote research and establish awareness programs. So while everyone else is redefining health care as we know it, the CCFA apparently wants taxpayers to pay for those little purple rubber “awareness bracelets”!
No wonder Duncan is upset. He’s got another post worth mentioning about advocacy organizations that funnel all their time and effort (and fund raising) into finding a cure.
For a lot of Chronic Illnesses, a cure may be a long time off. I don’t think there will ever be a “cure” for Congenital Heart Defects (CHD’s); Wikipedia lists 23 separate defects and also states that the list is incomplete. (When I count them up I usually get 35 CHDs, not counting any “blends” – one defect superimposed on top of another.)
So while all these advocacy groups are running around shouting “Donate to us! Help us find a cure! We need your help to find a cure!” at the top of their lungs, a lot of them are forgetting one of the most important things they could do:
Helping those who suffer from that illness to live their lives to the fullest.
That’s one thing I like so much about my group, the Adult Congenital heart Association (ACHA). Yes, we’re all about the technology and the research, but our mission statement makes it clear that one of our goals is “to improve the quality of life and extend the lives of congenital heart defect survivors.” And that’s right there on our website’s front page for everyone to see. Eliza’s doing her part to keep us all going by organizing the ACHA Bolder Boulder team. The national office is promoting our “Don’t Get Lost” program to return CHDers to care who were told that they were “fixed” (a common occurrence). They have also recently developed Vision 2020, our initiative to make sure that everyone with a CHD has good health care – from their Pediatric Cardiologists through the transition to an Adult CHD doctor. We’re not just looking for a cure – we recognize that part of the “cure” is 1) better medical care and 2) doing your part to take care of yourself.
So take a good close look at your support group. What are their goals? What are they doing? Trying to find a cure is great, and hopefully one day someone will figure it out. But until then, is your group trying to help you make it day to day?
If not… it might be time to look somewhere else.