Huntington’s Disease (HD) is an inherited brain disorder
that results in the progressive loss of both mental faculties and physical
control. Symptoms usually appear between
the ages of 30 to 50, and worsen over a 10 to 25-year period. Ultimately, the
weakened individual succumbs to pneumonia, heart failure or another
In 1993, my parents and I endured a horror that has been visited upon millions of families across the globe – we watched helplessly as my brother Ron died of AIDS. He was only 32. It is hard to believe that over a decade passed, because all I have to do is close my eyes, and there he is – my friendly, outgoing brother who grew up to charm every person who crossed his path, travel all over the world, and embrace the joys of life to the fullest. I wish you could have known my brother.
In 1993, my parents and I endured a horror that has been visited upon millions of families across the globe – we watched helplessly as my brother Ron died of AIDS. He was only 32. It is hard to believe that over a decade passed, because all I have to do is close my eyes, and there he is – my friendly, outgoing brother who grew up to charm every person who crossed his path, travel all over the world, and embrace the joys of life to the fullest. I wish you could have known my brother. For Ron, the glass was always half-full, more than half-full, because life was always teaming with possibilities. Even after his HIV diagnosis, Ron refused to let his illness get in the way. He didn't want to miss anything! One of my favorite photos of Ron was taken at a gathering in New York City just a few weeks before he died, smiling in the midst of his many friends, the life of the party. During periods when he was very ill, Ron's unfailingly upbeat personality not only helped him to endure the days of pain and sickness with his spirit intact, but it also carried all of us – his family, friends, and caregivers – through the difficult, helpless times when we wished we could somehow do more to help him. My parents and I gratefully remember the lines of friends who came to visit Ron in the hospital during those final days, the same friends who all came to the funeral and spoke so movingly about my brother and the good times they shared. We also remember wanting to find a special and appropriate way to commemorate Ron's life, and wishing there was something we could do so that other families would be spared the unspeakable grief of losing their loved ones to this terrible disease. That's when I learned about the important work of amfAR,
The Foundation for AIDS Research, and the family decided to establish a memorial fund in Ron's name to help raise money for amfAR's AIDS research programs. To me, it seemed the perfect match. After all, it is only through research that we will solve the riddles that block progress towards the development of better treatments for AIDS, a preventive vaccine, and eventually a cure. Also, I believed supporting AIDS research would be a fitting memorial to Ron's optimistic personality, zest for life, and above all, his hope for the future. For anyone dealing with a life-threatening illness, research truly is hope in action. Since establishing the Ronald Harf Memorial Fund at amfAR in 1993, my parents and I have taken great comfort in knowing that we have helped support the Foundation's innovative programs funding scientists who are conquering the new frontiers in AIDS research. We are proud to have been part of amfAR's many successes, including the pioneering work behind the development of protease inhibitors, treatments to prevent mother-to-infant HIV transmission, and most recently, the discovery of the new AIDS drug Fuzeon. So, on the anniversary of Ron's death, as we pause to remember him, my parents and I want to invite you to join us in making an investment in the hope that research affords us – hope for a world without AIDS. Please support amfAR, The Foundation for AIDS Research, through your employee giving program (CFC #11996).