Posts Tagged ‘Advocacy’

Grunt Work

November 7, 2010

I was in Philadelphia last April, helping out at the offices of the Adult Congenital Heart Association (ACHA) as they prepared for Lobby Day 2010.  On Lobby Day ACHA members – joined by members of the Children’s Heart Foundation and Mended Little Hearts – gathered in Washington, DC to visit the US Capitol. Our goal was not a sight-seeing trip, but to visit our legislators and convince them to fund Congenital Heart Defect provisions of the new healthcare law.

Knowing the ACHA office would be swamped with work (we had a total of four people in the office at that time) I volunteered to come to Philadelphia a few days early and help out any way I could. Unusually enough, “any way I could” turned out to be…

…. copying, sorting, and stapling.

Wow – that was a classy assignment there, Steve. They must not have needed that much help, after all!

Hardly. The ACHA staff was still setting up appointments with the legislators or their staff when I arrived. 48 hours until we left for DC; 72 hours to Lobby Day, and things hadn’t fallen into place yet. When we weren’t making appointments we were on the phone with our Advocacy Director working out final details. There was also a small crisis with the host hotel that wasn’t resolved until the last moment.

Making legislative appointments for 100+ attendees, smoothing things out with the hotel, working with the Advocacy Director to make sure things were just right… I don’t know how to do any of those things. So I was copying, and folding, and sorting, and stapling – so that the people who do know how to do those things didn’t have to worry about it. Or stop what they are doing to do it.

It’s “grunt work” – the repetitious, mindless type of job that no one wants to do. Everyone there could have done it, but they had skills that I don’t have, so I did the job. My best guess is that I handled 500+ separate sheets of paper. If you attended Lobby Day 2010, your informational sheets were assembled by me. (Don’t worry, I washed my hands!)

This is what advocacy for any worthwhile cause is – the willingness to do the little tasks, the grunt work, the behind the scenes activities that makes everything flow smoothly.

Helping our friends

July 13, 2009

In case you haven’t noticed – who could miss it – the US Economy is still weak. And I know from personal experience that community based organizations are the first to take a financial hit: I voluntarily left a small agricultural museum when we were struggling. After the events of September 11, 2001, tourism dropped dramatically and we were barely hanging on.

But that was then and this is 2009. Smaller support and advocacy organizations are feeling the heat. Donations are down across the board. A friend works with a community food bank, and according to him, “We’re keeping the lights on and not much else.”

So… how’s your Congenital Heart Defect (CHD) support group doing? They may have a policy of not releasing financial information, but if you have been a member for any length of time, you can tell. But I know from experience that a lot of them are hurting – and they are cutting services to the bone, just trying to survive.

Your CHD organization would certainly appricate a donation, and every little bit helps. To be completely honest, I’m going through my own money crunch right now and I haven’t donated to the ACHA in a while… but as soon as I work this out, I am going to.

Another thing that you can do is learn how to share your story. With everyone cutting back, your support group’s Outreach and Advocacy programs have certainly been reduced. No one’s telling about all the great things that they are doing and the people that they are helping.

And that’s where all of us can help. If you have a CHD or you are the parent of a Cardiac Kid, you’ve got an amazing story to tell. Think it through, write it out, and learn how to tell it. I wrote about how to tell your story back in December; you can read those posts HERE and HERE. And be sure to mention your support group – they’re the gang that will ride into battle with you; and they are there for you through thick and thin. This time they are hurting and its only right that you come to their rescue.

There are approximately two million of us living with a Congenital Heart Defect. If we all start telling our stories, we can raise awareness and help our support groups survive the economic downturn.

It’s up to us;

What’s the goal?

June 29, 2009

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.