June 10 - HDSA Convention - Day 2

After a rich full day on Friday, 6:15 am came early as we readied for the Team Hope Walk. Ron has been having a bit of trouble with his hip, so he didn't want to stress it. Sherri, Gary, Charlotte and I did all participate, along with a few hundred others. I didn't hear a final count on the walk, though. There were two choices, a shorter walk and a longer walk. We all did the longer walk, around the campus at the Red Rock.

The morning was taken up with general sessions. The HDSA Research Keynote Address entitled "Huntington's Disease - Yes We Can!" by Dr. Sarah Tabrizi, MD, FRCP, PhD was excellent. She is from University College in London. She had a fresh, novel approach which I don't think I'd heard before. She had a video which was shown with 5 different folks with HD, one of which was the correspondent Charles Sabine. She talked about Gene Silencing Therapy, which stops the production of mutant protein. She also talked about the brain's immune cells. In HD, both the brain and the body immune system is overactive. The aim is to delay onset. Mutant Huntington cells are carried on a small molecule, and researchers would like to send it on a "Huntington Holiday." She received a standing ovation, again, the first time I have experienced anything like that at Convention.

After the break, Dr. Ira Shoulson, MD moderated the Clinical Research Showcase. The Panelists included Dr. Bernhard Landwehrmeyer, MD, PhD from ENROLL-HD, Dr. Jane Paulsen, PhD with PREDICT 2.0, Dr. Steven Hersch, MD, PhD with CREST-E, and Dr. Ira Shoulson, MD with REACH2HD. There is a major effort going on to get folks to enroll in these clinical trials.

Lunch was on our own. Again, Ron and I went to the Food Court and had lunch there with Sherri.

I attended the session on Alternative Medicine by Dr. Kathleen Shannon, MD. She described three categories as genuine (sound evidence, safe, and effective), experimental (unproven but plausible), and questionable (groundless, not plausible). Nothing new was mentioned, but she did remind folks to tell your doctor what you are taking, be aware of safe doses, and not to neglect mainstream treatments. What is recommended is very similar to a regimen for those without HD, too: exercise, sleep, a multivitamin, CoQ10, fish oil, Vitamin C, good posture and breathing, and avoiding smoking and excessive drinking.

The last session I attended was HDSA Field Leadership: Raising Awareness through Media Outreach, Creating Press Releases and PSA's and Social Media. Websites are the lynchpin of all communication, and should be used to publicize all events. Make friends with the local media, and have 3-4 local contacts. Be sure to have a clear announcement in the first paragraphs. HDSA has a "Talking Points" form on their Extranet, which is a hidden area on the website where a password is needed to access. A timeline is to start 3-4 months from when the event will occur. One month before send reminder postcards, one week ahead issue a Media Press Release, and two days before an abbreviated Media Press Release including the usual "What, Where, Who, When, and Why." The local media want personal local stories. Facebook is a very popular Social Media to use.

Ron and I went to the Reflections of Hope Meditation Room where two of the quilts were hanging. A video about a bike ride for an older teen with HD was being shown. They are coming through Colorado this fall, and hopefully I can hook up with them in some way.

Everyone dresses up for the Gala Reception and HDSA Awards Dinner and Gala. The reception was in one ballroom, then about 6:45 pm everyone moved to the other ballroom and staked out their seats. Ron and I sat with Sherri and some other folks, but lost Charlotte in the shuffle. The food was OK - typical, salad, chicken breast on mashed potatoes and some veggies, and cake for dessert. For me, the highlight was finally finding Linda Oades Pimental and her daughter Stephany. I met Linda back in 1999 at the beginning of the first "Bike For The Cure" ride, when she, her then husband Steve, and three of their four daughters came to a spaghetti dinner in Redlands CA. Steve was the uncle of Megan Younger. Steve's father (who had HD and passed it on to 4 of his five children) was Megan's grandfather. Steve took his own life in 2001 under the influence of HD and not wanting his family to have to care for him as the disease progressed. So sad ... I had never met Stephany until that night; she is a beautiful young lady who is now 21 and pursuing a career in medical technology. Hope to stay in better touch with Linda now.

After the awards, there is always dancing; caregivers, researchers, people with HD, everyone dances. It always amazes us how Charlotte cuts loose once a year! Ron and I managed to dance to the Electric Slide, and the slow dance afterwards. It had been three years (since the Convention in Phoenix) that we had danced.

Didn't stay up too late, anticipating the long drive home on Sunday.

Two long days at the Red Rock - always memorable, but now coming to a close. Next year's Convention site was announced. Back to the East Coast, Jacksonville FL on June 21-23 at the Hyatt Regency on the Riverfront.

My first HDSA Convention was in 1998 (the 13th Annual) and this year was my 15th Convention (the 27th). By the grace of God and the generosity of HDSA, I haven't missed one yet since I first became involved. Charlotte's first was in 2001 in San Diego, and she hasn't missed since then.

Lights out!