April 16, 2009
By Mark Dunning
What can I do to help my child? That's the first thing parents ask when their child is diagnosed with Usher syndrome. Given that there are no accepted treatments for Usher syndrome at the moment, parents are often encouraged, with the best of intentions, to support research.
The problem is that most parents don't know how to support research. When they are told they can help their child by supporting research, what they hear is 'We need money. Write a check.' For some families, that's not an issue. They have the money and are eager to provide financial support. But that's not true of all families and it can actually be detrimental to research efforts if they perceive that the only way they can help is to 'write a check'.
That's because 'write a check' has different meanings to different people. I'm asked to 'write a check' and I'm thinking a hundred dollars. Here, go buy your team some pizza. It's on me. That doesn't exactly fund a multicenter study, however. I had one researcher tell me he was trying to get several 'small' donors together to fund a project. His idea of small was $50,000. That made me a microscopic donor which went well with my microscopic self esteem.
And that's the problem. I already felt like a failure. I'd failed my child genetically. I'd failed my child by not recognizing her situation sooner. I'd failed my child all those times that I got mad at her for not seeing something that was right there. And now I was failing her financially as well. I should have studied harder or chosen a different career. I should have invested more wisely or played the lottery more often. It was hard to find anything I had done right. And now here I was asked something simple. Just write a check like the thousands I'd written before to pay my bills. But I couldn't, at least not one that mattered.
Worse still was the impression, real or imagined, that by not writing a check I was no longer allowed to be privy to any of the research being done. Writing a check seemed to get you tours of the facility and dinner with the researchers. Failure to do so seemed to mean you got a phone call from a graduate assistant in a few years. I felt as if not only had I failed my daughter, but I'd gotten her locked out of the party as well.
This is very dangerous because it drives families away. Any researcher will tell you that there are two things Usher syndrome research needs the most. The first, as we've said, is money. The second is research subjects. This is a low incidence disorder. There are quite simply not enough appropriate research subjects to fill the studies we want to run. So in trying to solve the first problem (no money) we exacerbate the second (no subjects) by sending a bunch of families home with the notion that if you can't write a check there is nothing they can do.
That's why it's so important to find ways to engage families in the research that does not involve a financial commitment. Yes, we need money, but we also need participation. We need everyone to contribute natural history information. Not just that of the patient, but that of the parents and grandparents and the siblings. Yes, we need more funds, but that doesn't mean it has to come in the form of a personal check. We need press coverage to raise our profile. We need to lobby our representatives for funding. We need volunteers for fundraisers and to update web sites and write newsletters.
Success in this endeavor will require a grass roots effort by the whole Usher syndrome community. Everything we do should be geared to encouraging participation. Researchers don't like asking for money anyway and those families that can make an impact financially will usually do so whether they are asked or not. So you don't have to 'write a check' to help. Just stay involved.
