November 4, 2014
by Mark Dunning
I have a confession. I hate asking for money. Despise it. The fact that I am doing so should tell you just how important I believe the Usher Syndrome Coalition is to finding treatments for Usher syndrome. I have estimated that we will need $50 million annually for each of the next 18 years if we are going to find treatments for every person of every age with every type of Usher syndrome everywhere. None of us has $50 million to donate, annually, for the next 18 years. But you probably have five dollars and I think we can turn that fiver in to $50 million.
The way I see it, there are two ways to turn $5 in to $50 million. One, buy a lottery ticket. Megamillions is $284 million as of this writing. Each ticket is a buck. Your chances of winning are 1 in 258,000,000 but if you buy five tickets at a dollar a piece your chances improve all the way to, uh, 1 in 51,600,000. So, um, yeah, maybe the lottery isn’t our best bet.
But there is a much better investment. The Usher Syndrome Coalition. Hang on, more math to follow.
There are 650 families (from 36 countries) in the Usher Syndrome Registry. If each family gave just $5 a week to the Usher Syndrome Coalition that would be $14,000 a month. Hey! That just happens to be about what it costs to run the Usher Syndrome Coalition. Better still, if everyone on our mailing list, all 1300 people, donate that same $5 a week, we would be able to maintain current operations AND expand our international outreach and support to more quickly meet our goal of identifying everyone in the world with Usher syndrome.
Let me walk you through how those efforts, funded by your five dollars, translate in to $50 million a year.
- We are working with leading institutions around the world to contact people with Usher. Those people are the source of natural history information, the pool of clinical trial candidates, and, most importantly, they are inspirational.
- We connect Usher families with Usher families. We do this to combat the social isolation that often comes with Usher syndrome and to ensure that all families know there is an Usher community out there to support them. This keeps them engaged and available.
- We educate those engaged families about the very latest in Usher research through monthly researcher conference calls, social media, and annual conferences. The hope provided by the research encourages families to not only read up, but to get involved. Inspired families have carried the Usher Syndrome Coalition mission to the Netherlands, Austria, the UK, and Australia with France, Ireland and Canada close behind. We have connections in 36 countries. We can reach a majority of the population with Usher syndrome. Now we just need to connect with them and maintain a relationship with them. The Usher Syndrome Coalition provides the means to do that.
- We help Usher researchers collaborate not only with each other, but with Usher families. The output of the International Symposium will be an Usher Syndrome Roadmap produced by and endorsed by most of the leading Usher researchers in the world. This will be a powerful document to use in raising funds.
- We are planning an awareness campaign for next year. We want Usher syndrome to be as well-known as ALS. We won’t raise $100 million like the ice bucket challenge, but we will get on the radar of a lot of people especially when we tell your inspirational stories.
- That awareness campaign will reach some key decision makers. We are planning a congressional briefing on Usher syndrome next year. We have already gotten language about Usher syndrome in the last two congressional spending bills. We will have a roadmap endorsed by the leading Usher syndrome researchers. We will have inspirational story after inspirational story. Usher syndrome affects the same number of people as Huntington’s disease. Huntington’s disease receives $57 million in NIH funding annually. We have every reason to believe that Congress will see an organized community with an urgent need and a plan that should receive similar funding. Our number: $50 million.
- But we can’t just wait on Congress. We need diverse funding sources. There are other large philanthropic groups that we believe will be similarly inspired by an organized community with an urgent need and a plan. These non-governmental organizations fund scientific research and have billions of dollars. They may supplement the scientific investment of governmental organizations like NIH. Or they might invest in seed projects that advance the science.
- Those advancements, those seed projects, could entice biomedical companies to invest in Usher syndrome. Biomedical companies are profit driven. They will only invest if there is a reachable market for a treatment. Did I mention that we are working with leading institutions around the world to contact people with Usher and that we have a foothold in 36 countries? That is the reachable market needed to draw in biomedical money. When they invest, biomedical companies spend tens of millions of dollars on the research.
That’s how the Usher Syndrome Coalition accelerates research. That’s the best way you can turn your $5 in to $50 million. It won’t be a $50 million check but we have every reason to believe that a combination of governmental agencies, science-driven philanthropic organizations, and biomedical companies will produce that $50 million we need annually. To make it happen, we need an Usher syndrome community, and to build that Usher syndrome community we need the Usher Syndrome Coalition.
So invest your $5 a week today. You can set up recurring withdrawals on our site. You’ll have to give up two slices of pizza or a venti mocha Frappucino a week but, hey, you’ll get treatments for Usher syndrome in return. And I’ll stop asking for money so unlike the lottery, everyone wins!