June 9 - HDSA Convention - Day 1

Here I am back again, with a 10 day hiatus in writing my Daily Messages from the road. Last one was the one about arriving at the hotel and a bit about Las Vegas. A few folks have contacted me wanting to know if I got home, etc, so the plan is to write Days 13 and 14 about the HD Annual Convention, and Day 15 for the trip home. It is so much easier typing on a regular keyboard compared to the one on the Samsung Tablet I used on the road.

The Convention was held at the Red Rock Resort/Hotel/Casino. It is a huge complex very far west in Las Vegas. It got its name from the canyon that we rode through when we took "the back road" to the Convention site.

A little description of the hotel. I'm quoting from Charlotte's description in her Daily Message to her "group." " Everything here is huge, hallways are widest we have ever been in and they curve! Décor is deco modern, huge mirrors framed in black, modernist bold paintings, lots of marble--floors, counters, crystal chandelier 30 feet tall in lobby, carpeting red/gray/black swirling lines, modernistic chairs, tables, couches in shades of aqua, and it is cold! We keep our room warmer.. Bathrooms are white and gray marble, and there is a very deep gray and white marble tub that Charlotte could fill with hot water to her neck." Our room is on the 8th floor; the Convention is all on the 5th floor.

The Opening Ceremony was held in the Summerlin Ballroom. We were welcomed to Las Vegas by Jenny Rogers, the President of the HDSA Las Vegas Affiliate. She is a beautiful blonde young woman who has tested gene positive for HD. Don Barr, the Chairman of the Board, also welcomed attendees. This year, for the first time, a live videostream was added so that people who could not physically attend the Convention would be linked to the Convention. It's also the 100th anniversary of the birth of Woody Guthrie, whose 2nd wife, Marjorie, spearheaded the founding of the organization that evolved into HDSA. The Social Security Administration has added Juvenile HD to their "compassionate allowance list," allowing quicker access to services. It was announced that Rep. Bob Filner, a co-sponsor of the advocacy bill in Congress, would not be seeking re-election. Lundbeck has provided close to 100 scholarships to the Convention for first time attendees. Louise Vetter, the CEO of HDSA, re-confirmed the commitment of HDSA to both "Care and Cure." She outlined a plan with 7 goals: (1)To build more community service by adding more Centers of Excellence, more social workers, and more access to services (2) to remove barriers to quality care (3) to grow volunteer involvement (4) to operate with fiscal responsibility (5) to increase fundraising (6) to tell HD stories with passion, and (7) to retain the "can do" Guthrie spirit.

"We Are HDSA" panel discussion then ensued, composed of HDSA family members Ted Krull, Shana Martin, and Ken Serbin. Ted shared his experiences and that of his wife when they adopted a daughter who unbeknown to them had HD. Shana, whom we all know and love from past Conventions, talked about the analogy "When life gives you lemons, make lemonade. Plant the seeds and make things grow. Ken Serbin has been active in the HD community under the pseudonym Gene Veritas. He spoke about his daughter Bianca who was born gene negative for getting HD, although he himself is gene positive. He used the acronym HDSA to mean Hope, Determination, Solidarity, and Awareness, and stated that together we're going to beat this disease.

After the Coffee Break, a variety of Educational Workshops were available, 9 to be exact. It was hard to choose, but I attended the session lead by Sandra Kostyk, MD, PhD. I had heard most of what she had to say in prior year's session. When a child has JHD, usually it comes through the sperm of the father, which are more likely to have the mutation that causes HD. Chorea is less common in younger children; usually there are more seizures. It's important to do what is in the best interest of the child.

The timing for Ron's arrival at the hotel was perfect. He flew down to Las Vegas from Grand Junction with a stop-over in Phoenix. He walked in the doors of the hotel just as I was headed that way! I was so glad to see him after two weeks away! We wanted to get some lunch at the buffet, but about 200 other people had the same idea and so we went up to the hotel room and scrounged some lunch from the cooler.

Again, lots of choices for Workshops. I attended the one on Cognition and HD. Decline is seen in cognition, psychiatric issues, processing speed, perceptual/visuospatial, learning/memory, and attention.

Second afternoon workshop had 8 choices; mine was Behavior Issues, Treatment Options, and Pharmacologic Options. Speaker was Dylan Wint, MD, whom I had not heard before. Dr. Wint said there's not a lot of science on this topic. He discussed the use of some antidepressants and antipsychotics such as Risperidol, Seroquel, Olazapine, Dopamine, Valproic Acid, Lithium, Celexa, Memantidine, Effexor and Tiapride. Doctors start with a smaller dosage and then observe the results, and adjust appropriately.

The Convention Reception and Chapter Awards Ceremony followed. It was not what we had expected from prior Conventions which had elaborate spreads of fruit, veggies, cheeses, chips, etc. which could be a meal. Just pretzels and roasted nuts on the tables. Cost cutting measure, I guess. The Silent Auction was much smaller this year, compared to last year. I donated two sets of gambling themed hand-made potholders which ended up raising $25 for the NYA (young people's group in HDSA). We had dinner in the Cafe Court area downstairs on the Casino level. More moderately priced and quicker service.

Last but not least was the NYA Talent Show, from 8 pm - 10:00 pm. I was pretty tired, and Ron had already gone upstairs, so I only stayed long enough to hear a young teen from Durango play the theme from "The Pink Panther," Dances with various young people were auctioned off, also raising money for the NYA Scholarships.

Since the Hotel hadn't brought up a cot for Charlotte to sleep on (Ron and I had the king sized bed), she just slept on the padded bench at the end of the king bed, moving it closer to the dressers, etc. She is so tiny that it seemed like a bed to her.

All for Day 13. Rich full day, seeing friends from prior Conventions and meeting a few new folks.

I'll write Day 14 tomorrow.

With love,
Marie