Progeria Research Foundation

On March 12, Research!America honored extraordinary leaders in medical and health research advocacy during the 2014 Annual Advocacy Awards at the Andrew W. Mellon Auditorium in Washington, DC. We extend our congratulations to the honorees: Reps. Frank Wolf (R-VA) and Chaka Fattah (D-PA); actress Glenn Close and her family for their work to end the stigmas and misunderstandings surrounding mental illness; Leroy Hood, MD, PhD, president of the Institute for Systems Biology; Kathy Giusti, founder and CEO of the Multiple Myeloma Research Foundation (MMRF); Reed Tuckson, MD, managing director of Tuckson Health Connections; and The Progeria Research Foundation (PRF). While much has been done to...
The last day in February marks the annual International Rare Disease Day , first celebrated in 2008 by European coordinators the European Organization for Rare Diseases (EURORDIS). For the past five years, the United States has participated in this effort thanks to the hard work of the National Organization for Rare Disorders (NORD) and other committed alliances and patient advocacy groups. Rare diseases are classified in the U.S. as illnesses affecting fewer than 200,000 individuals ’€“ about 0.005% of Americans. These patients and their families often struggle to be heard and there are major gaps in research on treatments and cures due to the small percentage of the population impacted by...
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...
Glenn Close, Dr. Leroy Hood, Dr. Reed Tuckson, Kathy Giusti and the Progeria Research Foundation to Receive 2014 Research!America Advocacy Awards ALEXANDRIA, Va.-October 22, 2013- Research!America’s 18 th annual Advocacy Awards will honor extraordinary advocates of medical and health research who are distinguished in their commitment to advancing medicine and health. The event will take place on Wednesday, March 12, 2014, at the Andrew W. Mellon Auditorium in Washington, DC, as a part of Research!America’s 25 th anniversary commemoration. The 2014 Advocacy Award winners are actress Glenn Close and her family; Leroy Hood, MD, PhD, president, Institute for Systems Biology; Kathy Guisti,...
Glenn Close, Dr. Leroy Hood, Dr. Reed Tuckson, Kathy Giusti and the Progeria Research Foundation to Receive 2014 Research!America Advocacy Awards ALEXANDRIA, Va.-October 22, 2013- Research!America’s 18 th annual Advocacy Awards will honor extraordinary advocates of medical and health research who are distinguished in their commitment to advancing medicine and health. The event will take place on Wednesday, March 12, 2014, at the Andrew W. Mellon Auditorium in Washington, DC, as a part of Research!America’s 25 th anniversary commemoration. The 2014 Advocacy Award winners are actress Glenn Close and her family; Leroy Hood, MD, PhD, president, Institute for Systems Biology; Kathy Guisti,...
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®-...
Recently, a group of scientists, clinicians and patients gathered in a suburb of Washington, DC to discuss scientific progress in the study of a rare premature aging disorder. This disease, Hutchinson-Gilford Progeria Syndrome’€”often referred to as HGPS or simply progeria’€”is one you may not have heard of, yet. But the Progeria Research Foundation and families of progeria patients have been working hard to increase awareness and raise funds for research into this rare disease that results in death at an average age of only 13. Among the list of speakers at the conference was the Director of the National Institutes of Health, Francis Collins, MD, PhD and researchers from a number of...

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Laurie MacCaskill, a seven-year pancreatic cancer survivor