Regan J. Carter

Regan Jameson Carter passed away in his home, surrounded by friends and family, on Friday, February 15th, 2008. He will be greatly missed and dearly remembered. Biography: Regan Carter Regan Carter was diagnosed with ALS in early 2003, and in the four years that have followed has distinguished himself as an aggressive leader and advocate within the ALS community and beyond. He began by familiarizing himself with the ALS research landscape and quickly became an expert on the research activities of MDA, the ALS Association, and the NIH. He attended fund raising dinner galas for Project ALS, put on by the Estess sisters in Beverly Hills and New York, and made several rounds visiting Bob Brown at Harvard and Jeffery Rothstein of The Robert Packard Center for ALS at John Hopkin's. Regan was particularly impressed with the aggressive and entrepreneurial approach of ALS TDF in Boston (now known as ALS TDI) founded by Jamie Heywood. Regan's first fund raising event was held at The Multnomah Athletic Club "MAC' for ALS TDF, where he made his first keynote speech. From that point on, Regan was deeply committed to the task of increasing awareness of ALS and raising funds for research and he soon began to work closely with organizations within his local community. In 2004, he joined the Board of Directors of the Portland chapter of the ALS Association. ALSA's focus on government advocacy efforts was of particular interest to him, and since his involvement he has seen four major bills passed. Regan has visited Capital Hill twice for the annual ALS Advocacy Day and lobbied all of the Oregon Congressmen and Senators, providing his own testimony on the senate floor. In his last trip to Washington DC, he participated alongside individuals such Lance Armstrong and Michael Milken of Faster Cures. In 2005, Regan's keynote speech at Portland Art Museum during the first annual "Light a Fire" awards ceremony hosted by Portland Monthly Magazine was received with a standing ovation from the 600+ attendees. He was then presented with an award for the "Top non profit board member under 40". His efforts were additionally profiled in the Oregonian, The Business Journal, and numerous other publications throughout the Northwest. Regan continues to remain active in organizations committed to developing a treatment or cure for ALS, and in 2007 began collaborating with National MDA-ALS Chairperson and former fitness industry icon Augie Nieto. Through the Augie's Quest Initiative, Regan is helping to create a campaign for ALS Awareness that will support fast-track, translational research for ALS. During the last four years, and while simultaneously battling the debilitating effects of the disease, Regan continually insisted on the importance of seeing past institutional politics and learning how organizations can consolidate, cooperate and collaborate with one another. Over time, he realized that in order to create change for individuals living with ALS, it would be necessary to create a unified voice of change for all neurodegenerative diseases. Determined that there was no challenge too great to stand in his way, Regan went to work on formulating a groundbreaking research initiative that would completely redefine the rules of medical research. In 2006, he launched the Center for Advocacy for Research and Education for Neurodegenerative Diseases (CARENeuro). His initiative focused on collaboration among researchers and reform of the governance of medical research, providing a new and much needed prototype for neuroscientists of the future. After just one year, CARENeuro has succeeded in drawing the attention of researchers, students and policy makers throughout Oregon and beyond. Regan's innovative model for reform is undoubtedly paving the way for other advocates of neurodegenerative diseases around the country and has made a substantial contribution to the establishment of a cohesive, effective voice for support of neuroscience research.

» View the original video «

YouTube | March 17, 2008

Tags:. .tdf. .milken. .rothstein. .augie. .multnomah