At its upcoming Martina McBride Gala Concert in November, Dana’s Angels Research Trust will celebrate being honored as a recipient of the 2016 RARE Champions of Hope Award for Collaborations in Science and Technology. On Saturday, Sept. 24, Global Genes®, one of the leading rare disease patient advocacy organizations in the world, will recognize Dana’s Angels Research Trust along with DART’s funding collaborators in Support of Accelerated Research for Niemann-Pick type C Disease, or SOAR-NPC, the Hide and Seek Foundation, the Race for Adam foundation and Fight NPC, and SOAR-NPC’s research collaborators, Dr. Daniel Ory of Washington University, Dr. Steven Walkley of Albert Einstein College of Medicine and Dr. Charles Vite of the University of Pennsylvania, for their outstanding work in collaborative science.
The annual RARE Tribute to Champions of Hope Gala, presents rare disease champions from around the globe that are proving that great things can be accomplished by dreaming, planning, taking action, and believing. The purpose of the RARE Tribute to Champions of Hope Awards is to recognize those who are uniquely attacking the challenges they face in the fight against rare disease; those who are thinking outside of the box and working tirelessly, not focusing on what was, but setting their sights on what can/will be. Over 350 individuals and organizations worldwide were nominated by their peers for the award. From the extraordinary list of nominees, members from the Global Genes Board of Directors, Medical and Science Advisory Board, and other key partners selected the recipients to be honored at the 5th Annual Tribute events.
About Dana’s Angels Research Trust
Dana’s Angels Research Trust, founded by Andrea and Phil Marella, is a non-profit organization that funds research for a rare disease, Niemann-Pick type C (NPC), a fatal, cholesterol storage disease affecting children. Two of the Marella’s four children, Dana and Andrew, were afflicted with NPC. Most children who suffer from NPC die in their early teens, but DART has helped change that fate. As an all-volunteer organization, over 95% of the funds expended are channeled directly into supporting pivotal NPC research; research that may also help millions of people suffering from HIV/Aids, Ebola, heart disease, stroke, Alzheimer’s disease and other disorders that appear to be related to cholesterol. To date, DART has raised almost $4 million toward the search for a cure for NPC. DART is particularly proud of its commitment as a founding member of SOAR-NPC. Sadly, the Marella’s daughter, Dana, passed away at the age of 19 in the summer of 2013. The Marella’s youngest child, Andrew, now 17, is battling seizures and has walking and swallowing issues. However, Andrew has benefited from two experimental medications and has participated in the latest drug trial for almost 3 years, first conducted by the NIH and now managed by Vtesse, Inc.
On Friday, Nov. 11 DART will host its 2016 Gala Benefit and Concert featuring country music superstar Martina McBride. To learn more about DART and to purchase VIP Gala tickets to the Martina McBride Gala and Concert, visit DanasAngels.Org or facebook.com/danasangels. To purchase concert-only tickets, visit PalaceStamford.org or call 203-325-4466.
Support of Accelerated Research for Niemann-Pick type C disease or SOAR-NPC is a collaboration created by parents and scientists as a grassroots response to the absence of treatments for NPC. SOAR–NPC is innovative in the openness with which scientists share data with supporting family foundations for a mutually beneficial relationship. The SOAR-NPC scientific collaborative is comprised of investigators from leading institutions where NPC research is conducted and works closely with the National Institutes of Health and other organizations to leverage research investments. By focusing on compounds that do not need new discovery efforts, SOAR-NPC has helped shepherd a trial to test a treatment that could slow the progression of NPC. That trial now has a commercial biotech company sponsor, Vtesse, Inc.
About Global Genes
Global Genes is a leading rare genetic disease advocacy organization. Global Genes works to eliminate rare disease challenges by building awareness, developing patient-focused educational tools, and funding patient care programs and early investigative research. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes is dedicated to connection. Global Genes unites experts, advocates and patients of all ages, seeking treatments and cures for the 7,000+ rare genetic diseases that affect 30 million Americans and over 350 million people worldwide.
Andrea and Phil Marella with their son, Andrew Marella (middle) who is afflicted with NPC.
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