Edolphus Towns: “Recently I met Jill Wood from my district in Brooklyn. I was very moved by this meeting as she described the struggles…”

“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.…”