Sam Berns

Excerpt of a blog post by Dr. Tom Insel, Director of the National Institute of Mental Health. (From NIMH blog) The Research!America awards dinner is like a lot of DC galas, complete with members of Congress, celebrities, and speeches to honor those who have contributed to a cause. For Research!America, the cause is biomedical research and this year, as in each of the past 25 years, there were honors bestowed on advocates for cancer and rare diseases. Kathy Giusti, diagnosed with multiple myeloma in 1998, spoke passionately about the lack of research on this blood cancer and her singular fight to create a registry and clinical trials, leading to new treatments that have extended her own life...
Dear Research Advocate: The omnibus appropriations bill about to become law demonstrates that bipartisanship and pseudo -regular order is achievable. We won’€™t know for sure if we have true ’€œregular order’€ until Congress proceeds through the FY15 appropriations process in a timely manner ’€” something that hasn’€™t happened for many years. The importance of regular order is that the public’€™s interests are heard from in hearings, and every Member of Congress participates in priority-setting instead of only having the opportunity to cast a single up-or-down vote. Regular order is worth working toward, since at least one priority we all care about did not fare well in the omnibus. The...
Next Monday, October 21 at 9:00 pm EST, HBO will debut LIFE ACCORDING TO SAM , the story of Sam Berns, a young boy with an extremely rare and highly-rapid aging disease called Progeria, and his family’€™s 13-year fight to find a cure. This film tells a story not only about the love of physician parents trying to save their son ’€“ it also portrays a winding journey throughout the scientific process and the pivotal role that medical innovation plays in our lives. In the film we see children with Progeria gather in Boston from around the world ’€“ all expected to live no longer than 13 years ’€“ to receive treatment and participate in a first-of-its-kind clinical trial. The film’€™s Oscar®-...
Next Monday, October 21 at 9:00 pm EST, HBO will debut LIFE ACCORDING TO SAM , the story of Sam Berns, a young boy with an extremely rare and highly-rapid aging disease called Progeria, and his family’€™s 13-year fight to find a cure. This film tells a story not only about the love of physician parents trying to save their son ’€“ it also portrays a winding journey throughout the scientific process and the pivotal role that medical innovation plays in our lives. In the film we see children with Progeria gather in Boston from around the world ’€“ all expected to live no longer than 13 years ’€“ to receive treatment and participate in a first-of-its-kind clinical trial. The film’€™s Oscar®-...

Sidebar Quote

We have health challenges in this country that science will provide answers for if given the chance and we haven't given science that opportunity
Mary Woolley, President and CEO, Research!America