Vegas redux

On this last trip to Vegas, we decided to tack on a few days before and after the NAF Meeting as part of our 25th wedding anniversary celebration. I've always been fascinated with Las Vegas ever since my first visit there 34 years ago. Since then, I've been back many times, courtesy of my late father who was a gambling aficionado.

Armed with the wisdom and advice of Ricardo Rodriguez, a frequent visitor to Las Vegas who has first-hand knowledge of the ADA-compliant hotel rooms of the city, we split our visit at three different hotels, the Bellagio, Flamingo and Wynn. The result was somewhat of a revelation.

After flying into McCarran, we marvelled at the ease, accessibility and friendliness of the airport facilities and staff. It was a breeze to hail a cab to get to the Bellagio Hotel. I guess the fact that Richard could transfer easily from his wheelchair to the cab made a big difference.

We booked our room at the Bellagio through David Ourisman, a travel agent who is affiliated with Virtuoso, and received extra perks during our stay there. These included continental breakfast for two each morning and complimentary room upgrade when available. However, the nicest "freebie" was the $85 dining (lunch only) credit at Sensi, an Asian-fusion restaurant located inside the hotel. We had already planned on eating at this restaurant so this gift was more than welcomed.

Our room at the Bellagio was very spacious and elegantly appointed and had two Queen size beds. It was located in the new Spa Tower. The view (parking lot) was nothing to write home about but we were willing to settle for a no-view room on a low floor for immediate occupancy since we checked in early and Richard was tired and wanted to nap. The bathroom had a good layout and an enclosed roll-in shower with a fold-down bench. The water pressure from the hand-held shower was very good. The only complaint is that the glass door to the shower was very heavy and awkward to operate for someone in a wheelchair. Ricardo mentioned that Bellagio also has rooms with Hoyer lifts for folks who need them.

We moved across the strip to the Flamingo Hotel in time for the NAF meeting. We got a newly remodeled Austin Power-ish "GO" room with a platform King bed, roll-in shower and an unbelievable view of the famed Bellagio fountains. The room was smaller than our room at the Bellagio but the roll-in shower was the best designed ADA shower in a hotel that we've ever encountered. Instead of the usual heavy glass door, this one had a shower curtain that was effective enough to keep the floor in the rest of the bathroom dry. The digital TV embedded into the bathroom mirror was another nice touch.

After the NAF meeting wrapped up on Sunday, we spent one day and night at the Wynn hotel. The plushiest of the three hotels, it also had the prices to match. The palatial room had two Queen beds and an enormous bathroom that echoed with our footsteps. The bathroom had both a roll-in shower and a bathtub with jets. It also had two sinks and a mini TV built into the wall. Unlike the Bellagio, the Wynn loaned Richard a wheelchair without requiring a credit card imprint from us. We were also informed by Cyndi Segroves, one of the speakers at the NAF workshops, who stayed at the Wynn during the meeting that the Wynn also has rooms with Hoyer lifts.

Overall, we were very impressed with the three ADA rooms that we stayed at during the trip. Any one of the three would more than meet our needs. The bottom line is then a matter of cost. Here's the break down:

Bellagio: We paid $206 before taxes per night for 2 nights. This was the "Virtuoso" rate during that period. However, we received "bonuses" worth $141. ($28 credit per day for breakfast for 2 days and a $85 dining credit at Sensi) Subtracting this amount from the room rate, it came to around $136 per night, excluding taxes.

Flamingo: We originally reserved a standard room at the NAF group rate of $124 per night before taxes. However, we opted to upgrade to the "GO" rooms at the last minute when we were informed by the check-in clerk that some of the "GO" rooms were ADA compliant. We were previously told when we called up to reserve the room that none of the "GO" rooms were handicap accessible. The upgrade cost an extra $44 per night, making the grand total $168.

Wynn: I booked the room directly from the hotel at a special promotional rate of $199 per night before taxes. This included a $100 resort credit that is good for dining at the hotel's restaurants, shows or spa expenses. Since we only stayed one night and had already planned to dine at the hotel, our out-of-pocket for the room was $99.

The moral of the story is that 4 star properties are more affordable than you think. It really depends on what you are looking for or what services you value. And then, there are the intangibles. The Flamingo is young and boisterous with girls and boys with spiky blue hair that woke us up three in the morning with their drunk hollering and running up and down the hallway on our floor.

This post is by no means an endorsement for any of the three hotels mentioned. I am merely sharing our experiences and observations on this trip with you. If you should happen to use the above information as a reference, please beware, as Richard is fond of saying, "your mileage may vary".

National Ataxia Foundation Annual Membership Meeting 2008

Thanks to the folks from the Arizona Ataxia Support Group, the NAF Annual Membership Meeting held in Las Vegas last month went off without a hitch. The event lasted three days with work shops, speakers, a silent auction and an evening banquet. We, as first timers, thoroughly enjoyed ourselves while meeting other ataxians and their families. Along the way, we saw Dr. Perlman and Mike Fernandes. Here are some of the highlights:

Friday, 3/28, started out with different workshops in the morning. We attended the following:

"Speech & Swallowing" with Gail Lommen who is a Speech Language Pathologist. She suggested the Lee Silverman Voice Treatment in helping with speech problems.

"Accessible Travel" with Cyndi Segroves, a travel professional who herself is mobility-impaired and uses a power wheelchair.

"Dancing with Ataxia" with Thomas Clouse, MD, who himself has ataxia but is able to walk with a normal gait and even dances on a regular basis. He shares his insight on how to regain the ability to walk. We were so impressed by what we saw that we purchased his instructional CDs.

The afternoon was devoted to "Birds of a Feather" meetings for ataxians, parents of ataxians and caregivers/spouses of ataxians. This is a time for people with the same type of ataxia to meet in small, informal groups to discuss and share their experiences and concerns of the disease.

Saturday, 3/29, the day started with talks and presentations by doctors and researchers on the latest about ataxia. Dr. Huda Zoghbi who, together with Dr. Harry Orr, first identified the SCA1 gene in 1993, spoke on "Translational Studies in Spinocerebellar Ataxia". In the middle of her presentation, I had a distinct sense of deja vu. I was convinced that I've seen the research on the mice before, but where? Then I recalled this post that I did back on September 30 last year. Unbeknownst to me at the time of that post, the speaker on the Youtube video was Dr. Huda Zoghbi! It was, however, much more exciting to hear Dr. Zoghbi speak in person.

The last person to speak that morning was Dr. Chip Wilmot. He spoke about "Ataxia Patient Registries". In order to facilitate both researchers and patients with ataxia in obtaining up to date information on the disease, it is vital that all ataxians register themselves with the Cooperative Ataxia Registry. As of now, only 370 people have registered. One of these 370 is Richard. 36 of these 370 people have SCA3. We are sure that there has got to be more than 36 MJD-ers in the United States alone. Please consider registering if you're an ataxian. Dr. Wilmot will be happy to answer any of your questions regarding the registry at:

Emory Ataxia Center
404-728-4782 (direct line, please ask for Cathy Wood)

Doctors Wood, Subramony, Schmahmann, Orr and Fahey spoke in the afternoon session. We feel privileged to actually see and meet researchers (Subramony & Orr) whose picture and articles appear regularly in Generations at the meeting.

The silent auction and NAF banquet rounded out the evening.

Sunday, March 30, our beloved Dr. Perlman started the morning with her presentation "FRDA Clinical Trials". Her talk was not just about Friedreich's Ataxia alone. She spoke at length on the most recent clinical trials on different types of ataxia and issues pertaining to clinic trials in general. She reminded people to do their part by registering with the Cooperative Ataxia Registry. For more information about ongoing clinical trials in the U.S., please go to:

www.clinicaltrials.gov

Dr. Arnulf Koeppen spoke about "Brain Tissue Repair in Herediatary Ataxia". He was followed by Dr. Broyna Keats who talked about "RNAi Research". Dr. Keats wittily called her speech "Shooting the Messenger". RNAi refers to the method of RNA interference to silence or prevent the mRNA (the "messenger" RNA) of a certain gene or genes from being expressed. Doctors Andrew Fire and Craig Mello were awarded the Nobel Prize for Medicine in 2006 for their discovery of RNAi. I wrote about our recent encounter with Dr. Fire here. Dr. Keats also told the audience that there is already an experiment done on SCA1 infected mice using the RNAi technique. This is encouraging news indeed even though human trials are in the very distant future.

The three day conference came to a close by early afternoon on Sunday.

We were told, unofficially, that next year's NAF Annual Membership Meeting will be held in Seattle, WA. See you then!