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A Way to Spend Your Fifteen Minutes

October 7, 2009

By Mark Dunning

A few postings ago I asked for our readers to devote fifteen minutes a day to support the cause of Usher syndrome research. I've gotten a lot of inquiries since from people interested contributing the time, but not sure what to do. In today's post and in future posts, I'll give you some ideas on how to spend your fifteen minutes.

First, some facts from the National Institute of Health (NIH) Estimate of Funding for Various Research, Condition, and Diseases . These are your tax dollars being spent on public health issues. In 2010, $45M is budgeted to be spent on ALS research. This is better known as Lou Gherig's Disease. It effects an estimated 1,100 people in the United States. Horrible disease, worthy cause. Same with Tuberous Sclerosis. It effects around 1 in 10,000 Americans which is roughly the same ratio as Usher syndrome. In 2010 NIH has budgeted $21M for research into Tuberous Sclerosis. Batten Disease, like Usher syndrome, is an autosomal genetic disorder that begins to present in early childhood. It effects 1 in 200,000 Americans (about 5% of the total effected by Usher syndrome). NIH has $6M budgeted for Batten research in 2010.

In 2010 NIH has dedicated ZERO dollars to Usher syndrome research. Zero. The big donut. Nada. Nothing. Crickets.

Now to be fair Eye Disease and Disorder of Vision spending by NIH is one of it's highest totals with around $827M budgeted. But this is shared among all eye diseases and Usher syndrome isn't just a disease of the eye. It's a syndrome. It effects hearing and balance as well. Money from this pool won't go to researching those other aspects of Usher syndrome.

Further, the Retinitis Pigmentosa (RP) specific research which would be funded by this pool may help Usher patients, but it might not. One of the biggest criticisms of a long term study on the effects of Vitamin A on Retinitis Pigmentosa patients is that it did not differentiate between the types of RP. In other words, not all RPs are created equal. Usher is unique and general RP research and treatments may not be applicable to it.

There are other sources of government funding that might help Usher research. NIH budgets $678M for Orphan Drug research in 2010. Usher is an orphan disease so presumably that funding would be available to Usher researchers. However that amount is nearly half of what was budgeted in 2006 for Orphan Drug research ($1,200M) and, again, is shared among ALL orphan diseases.

We need Usher syndrome specific funding to be allocated by NIH. We will get that funding the same way that ALS and Tuberous Sclerosis and Batten Disease got their funding: through family pressure. Our representatives and senators need to 1) know about Usher syndrome, 2) realize it's important to their constituents and 3) realize that with proper funding, we can cure it.

So here's a way to spend your fifteen minutes. Write your governmental representatives and ask them to ensure a specific allocation of NIH funds for Usher syndrome research. Write all the reps from your state. Write both your senators. Write the governor because, who knows, he or she might be the next senator. Or President for that matter.

The point is that there is no money allocated to Usher syndrome research specifically because too few have asked for it. We need Usher syndrome to be on the lips of everyone in congress. We need them asking those that make the budget at NIH why Usher syndrome isn't called out.

And don't think for a second that asking for an Usher syndrome callout will take money away from other worthy research causes like those mentioned earlier. There is nearly $10B (that's B-billion) budgeted by NIH for general clinical research. All we're asking is that NIH pull aside $50M of that general budget (or roughly what is budgeted for ALS) and mark it specifically for Usher syndrome research. Give Usher syndrome $50M and cure the leading cause of deaf-blindness in the United States. What representative wouldn't want 'cured the leading cause of deaf-blindness' on their resume?

Here's some tools to help you out. Click here to find contact information on your representatives and your senators.

Click here are some Usher syndrome facts.

Finally, here is a sample letter. Feel free to take from it whatever you might like. Obviously this example is written from my point of view. You'll need to modify it to work from your point of view (ie, you have Usher versus a family member has Usher). Be sure to include a personal story. You're not a lobbyist representing some faceless group. You're a real person, a constituent, a voter. This is an issue that effects you personally. Your representative needs to know that. Good luck.

Dear Senator/Representative NAME:

I am a resident of HOMETOWN,STATE and my daughter Bella has Usher syndrome. Usher syndrome is a genetic disorder that is the leading cause of deaf blindness in the United States. It effects an estimated 50,000 Americans and it is a terrible disease.

Children with Usher syndrome are born with hearing loss. Before they are teenagers, most display the symptoms of retinitis pigmentosa. Initially their night vision falters. Many are effectively night blind by their teenage years. Later they suffer from a narrowing of vision until, eventually, they retain only a fraction of the vision with which they were born. Most are legally blind by the time they are adults. Many physicians sum up the diagnosis this way: Your child is deaf, she is going blind, and there is no cure.

That diagnosis was crushing to my family. Hearing loss has been challenging enough. My family learned sign language for Bella and she has worked tirelessly to learn to speak English flawlessly. She has exerted an amazing amount of effort to maintain grades on a par with her hearing peers. My daughter loves to read, loves to draw, loves to dance, and loves to ride horses. She dreams of being a veterinarian. She is a happy child and succeeding beyond our wildest hopes. Usher syndrome threatens all of that.

It does not have to be this way. There are many promising research avenues waiting exploration that currently lack funding. Many of the leading researchers in Usher syndrome believe treatments for Usher syndrome can be made available within the next decade. The only thing keeping these treatments from our children are the financial resources to bring the research to fruition.

You can help change that. You can help cure the leading cause of deaf-blindness in America. Please ensure that the National Institute of Health dedicates $50,000,000 to Usher syndrome research in their next budget. That is just $1,000 for each American suffering from this disease and it is all we need to find a cure.

Thank you for helping my daughter.


Mark Dunning

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