Feeling Small and Alone? Here's Why You Shouldn't.

April 14, 2009

By Mark Dunning

One of the hopes of the Usher Syndrome Coalition is to create a community of families, researchers, care-givers, and fund raisers. Usher syndrome is a low incidence disorder. It's estimated that somewhere between 30,000 and 50,000 people in the United States have it. Compared to the overall population, that's a tiny number.

That feels especially true when you are first diagnosed. There is rarely a family down the street with the same diagnosis. There often isn't a family in the same county. Heck, you can feel like you're the only one in your state. Doctors usually are not well versed in the diagnosis beyond knowing that there is no cure (more on that in later posts). We feel very alone and very small.

But that's not true. We are neither small nor insignificant. We are just disorganized and dispersed, and in this age of technology, being dispersed is simply a nuisance.

Let me put this in perspective. The town I grew up in had about 30,000 people in it. The town had excellent schools, from grade school to high school, with very good sports teams and bands and chess teams and math teams and any extra curricular activity you could imagine. The kids that graduated from there went to everything from ivy league schools and trade schools. They grew up to be doctors and politicians and accountants and business leaders.

Our town had police stations and fire stations. There were churches and synagogues. There were pharmacies and grocery stores and pizza places and cinemas. Kids played on playgrounds and ball fields. We had parades and festivals, doctors and dentists, traffic lights and libraries.

In short, this town of 30,000 people was self sufficient and wanted for nothing. This Usher syndrome community should be the same. 30,000 people can do anything when empowered and organized.

Even that 30,000 number is incorrect. That's 30,000 people that have Usher syndrome. That's not 30,000 people in the community. I don't have Usher syndrome, yet here I am. My wife doesn't have it. Neither do my parents or her mom. But they are all engaged in the Usher syndrome community to some degree. So are Bella's doctors and the many, many researchers that are working on Usher syndrome, none of whom have Usher syndrome.

I would venture to guess that for every Usher patient there are, conservatively, ten people that want to help the cause to some degree. That turns our 30,000 people in to 300,000 people or roughly the population of Buffalo or Newark.

And that doesn't count international populations. There are more people internationally with Usher syndrome than there are in the United States. How many is not clear, but there are vibrant Usher communities in Sweden, Finland, England, and elsewhere. But lets say conservatively that there are the same number of people internationally with Usher syndrome as there are in the United States and that those people also have ten people willing to help. That's 600,000 people. That's the size of Glasgow and Rotterdam and Charlotte.

And it's bigger than Boston (pop 574,000), home of Harvard University, MIT, Massachusetts General, Children's Hospital, Genzyme, dozens of biotech firms, and the first Frontiers Family Conference on Usher Syndrome. Imagine if the populations of Harvard and MIT and Children's Hospital and Mass Eye and Ear turned all their collective brains and ingenuity on curing Usher syndrome and Usher syndrome alone. Do you have any doubt it would happen and happen quickly? Well, the Usher syndrome community has the same firepower. We just need to organize it. So don't feel small and alone. Get involved. Help us build this community. We're bigger than you think.