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Public Statements

Increase Funding for Rare Disease Research and Development

Floor Speech

Location: Washington, DC

Mr. TOWNS. Mr. Speaker, recently I met Jill Wood from my district in Brooklyn. I was very moved by this meeting as she described the struggles of her son, who is diagnosed with a rare genetic disease known as Sanfilippo syndrome.

Before we met, I was not familiar with this particular disease, but she touched my heart to hear about her child's courage. Every day he has to overcome physical disabilities that make it almost impossible for him to complete a very simple task that we complete with ease. I was inspired by the strength of their family and the bond that they share.

I have long been a strong advocate for rare disease research and development. In fact, this is why I am working with my colleague from Florida, Congressman Stearns, on H.R. 3737, the ULTRA Act. This bill would codify the flexibility the FDA needs to encourage development of treatments for rare diseases like Sanfilippo syndrome.

It is our duty, as Members of the United States Congress, to come together and support measures that aid the rare disease community. Imagine being afflicted with a disease your physician has never heard of and has no idea as to how to treat it. Can you imagine the devastation this would cause to your family?

We must provide the National Institutes of Health with additional funding to support the important research for orphan and rare diseases. We must also give flexibility and support to the FDA to help the agency bring potential cures and treatments to the market much sooner.

How long must we wait and continue to suffer until lifesaving treatments are available?

Nearly 30 million Americans are affected by 7,000 rare diseases. We must do everything in our power to support education, advocacy, research, and patient assistance to bring this number down. Imagine the families out there watching their loved ones suffer because we have not yet provided enough support for this cause.

We are a great Nation of innovation, but that innovation and drive only goes so far without the proper support coming from the government. Our constituents need to know that we hear their needs and that, as their elected officials, we are determined to make available the resources that will support them.

The next time I speak to a family affected by rare diseases, I want to be able to look them in the eyes and tell them that we have helped, that we made available the means necessary to support lifesaving research and development, we care and we will do everything in our power to ensure that everyone has the chance to live full, healthy, and prosperous lives.

Thank you, Jill, for bringing this to my attention.

I urge my colleagues to support the ULTRA Act and increase funding for rare disease research and development. It is so important that we do everything possible to be able to bring the numbers down.

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