Plains to Lakes
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Week Three



June 23 - Eden Prairie MN - Bloomington MN

Last day of this year's Bike for the Cure ...

Had to get everything packed. The van was left in the parking lot of the Prairie Hill E Free Church, to be picked up later on, after the ride ends at the hotel.

Pulled out of the parking lot on time (6:30 a.m.). Since I had devised the route, I lead most of the way. We headed East (sun wasn't visible so directioality was hard to determine). We kept riding East and after awhile I began to worry since we hadn't come to a cross street that I was anticipating. Just then, a man bicyclist came by, and Gary stopped him. Showed him the map, and discoved the first of two major mistakes. We were actually not on the map and we had ridden almost an hour! The bicyclist seemed like an angel sent by God just at the right time! He was on his way to work, but went out of his way to take us to where we needed to be.

Gary and this man rode in front, chatting back and forth.. All of a sudden I got this deja-vu feeling that I had been on this same route before. Familiar landmarks kept popping up. Then I had an "ah ha" moment; we had ridden full circle without knowing it! Second major mistake of the morning!

We were supposed to arrive at the Sheraton for a welcome at 8:30 a.m. but we were not going to make it. Called our contact with HDSA, Fred Taubman, and let him know our predicament. He was so gracious, and said to call him when we knew when we'd be there.

It really didn't take too long once we were on track. Rode through some residential neighborhoods, a bit hilly. Rode through part of another suburb city of Minneapolis, Edina. Then all of a sudden, we could see the Sheraton! Called Fred, and awaited his callback saying the greeters were assembled. Took off our raingear so we'd look better for pictures. Callback came, and off we went, just another half mile or so. We circled the building through the parking lot, and arrived at the main entrance with about 75-100 cheering for us! Lots of hugs-and photos. Gary and his wife Barb embraced. Lots of emotion. Thank God we arrived safely - 700 miles and almost two weeks behind us.

Took the bikes up to our room, then visited folks in the lobby and walked around.

Gary got his van from where it had been stored at a friend's for the last two weeks. He picked me up at the Main Entrance, and we drove back to the church in Eden Prairie, using the GPS on his Chrysler Town & Country van. Gary loaded up his gear, I loaded the cooler, and I followed him back to the hotel.

Got situated, brought our gear in, showered, etc. I went to a nearby soup/salad restaurant, and Charlotte ate a peanut butter/tofu/ romaine lettuce sandwich (her favorite). While I was eating, David Michener (Joan's dad) walked in, so he joined me. Just as I was done eating, I got a phone call from Rebecca Lampton saying she and Scott were in their hotel room. They're from our Support Group in Grand Junction, and Scott has HD. You can see their photo on our website (www.bikeforthecure.org). They were interviewed by the GJ Free Press.

Went upstairs to the hotel room where I got the carton of liquid nutritional supplement which we had transported (in the van) to the convention for Scott. Delivered the carton to their hotel room. Visited with Rebecca some.

So grateful to be at our destination, safe and sound. Looking forward to seeing many friends from past conventions and meeting new folks too.

Route reound-up:
Everyone rode 14 miles

Route total - 700 (more or less)

With love from Minneapolis,
Marie

PS. Joan is a PHD (Person with Huntington’s disease) who used to participate in the Grand Junction HD Support Group.


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June 24 - HDSA Convention

Got to "sleep in" this morning. No need to set the alarm. Breakfast in the hotel room, then wandered downstairs. Perused the vendors' displays until it was time for the opening of the Convention in the Grand Ballroom.

Don Barr, the HDSA Chairman of the Board, set the tone with the statement, "Together we are a voice of change." He also mentioned the HD Parity Act Bills that have been introduced in the Senate and the House of Representatives. There are 70 co-sponsors in the House, and 6 in the Senate. The tenets of the bill revamp and update the criteria defining HD, and eliminate the two year waiting period for Medicare.

Louise Vetter, the CEO of HDSA, reported a record number of registrants for this year's Convention - over 950. Those numbers were bolstered by the many scholarships that Lundbeck Pharmaceuticals made available to first time Convention attendees and their families, and the scholarships awarded to young people through the NYA (National Youth Alliance). Bryan Viau (pronounced View) spoke about empowering HD families. His question was, "What are you going to do to help?" He challenged families to make a choice, have courage, and hope to make a difference.

After the Coffee Break, the topic for the general session was "Healthy Eating for the HD Family." It was a very "hands on" session, with the chef preparing some food and demos of how to adapt varying food for the varying needs of a person with HD.

During the lunch break, I got an autographed copy of the new "Physician's Guide to the Management of Huntington's Disease." I know all three authors: Martha Nance, Jane Paulsen, and Vicki Wheelock.

From 1-2 pm I attended the session for Caregivers on "Explaining HD to the Community." The panel members included a social worker, someone from an HD family, and a police officer. When I get back to GJ, I am going to present the idea to our local support group to contact the Police Dept. Community Liaison officer, EMT's, and the Fire Department and ask them to come meet with us at our support group.

From 2:30 - 3:30 pm I attended the "Talking to Kids About HD." Three different young people talked about their experience learning about HD and their at-risk status. It is very important that any discussion be age appropriate, and make sure that kids feel loved and safe.

From 4-5 pm I attended the HDSA Field Leadership session on "Tips for Building and Strengthening Your Chapter; Simple How To's to Grow Your impact.

From 6-7:30 pm was the Convention Reception, NYA Silent Auction and the Chapter Awards Ceremony. Nice spread of fruit, crackers, cheese, veggies, etc. People talked way too much during the Chapter Awards Ceremony. Our "Plains to Lakes" annual Bike For The Cure ride was mentioned, but unlike in the past, we were not called up front and presented with a plaque. Not sure why, but I guess "the times are a changin'"

There was a performance of a kids Native American dance team by John Oakgrove & The Little Thunderbirds." Their costumes were very colorful. Good to see the Native American culture being passed on to the next generation.

As you can see, it was a full day. Visited with friends from previous Conventions and met some new folks too.

With love from Minneapolis,
Marie


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June 25 - HDSA Convention

Started the morning as usual with the Team Hope Walk at 7:00 am. About 360 people assembled, were given Team Hope white t-shirts, and walked en masse about 1/2 mile near the Sheraton Hotel. A donor pledged $5 / person who walked, so do the math - $1755 for HD Research!

The Part 1 of the HDSA Research Forum ran from 9:00 - 11:00 am, moderated by Dr. Marcy McDonald, the Chair of the HDSA Medical/Scientific Advisory Committee. She spoke about why following HD science matters. The next speaker talked about "Understanding Normal Huntingtin Function," and the last speaker talked about "HD Therapeutics by Silencing the Mutant Huntingtin Gene." There was a real effort to speak in terms of what the general audience could understand.

After the Coffee Break, Part 2 of the Research Forum began. "Synaptic Dysfunction as a Target for Therapy in HD" and "Enroll-HD: Engaging in Clinical Research" were presented. The Enroll-HD study is being started all over the world, and they hope to have about 40,000 participants.

After lunch I attended the "Be An Advocate for HD" session with Peggy Tighe, a lobbyist/lawyer for HDSA and Jane Kogan, from the National Office They presented an overview of the HD Parity Act, the power of the home office visit, making a personal connection with your members of Congress, messaging tips including how to answer the tough questions, and engaging your community for Support.

From 2:30 - 3:30 pm I attended the Living At-Risk Testing Panel presentation. Four different individuals spoke about their decisions to test (2 of them) and not to test (the other 2). Shana Martin was a speaker from the "not-to-test" perspective. I could see both sides.

From 4-5 pm I went to the session on "Mid State HD/ Managing Mid State HD) with Martha Nance, MD. She is an excellent communicator. She outlined the Shoulson-Fahn scale of 0 - 13 which helps to determine what Stage a person with HD is in. Dental care was discussed quite a bit.

The Reception/Convention Gala was from 6:00 pm on. Charlotte and I were invited to sit with Joan Michener, her father, her aunt, her sister and her partner and partner's daughter. Nancy Patterson from Maine also sat with us. Nice dinner with salad and rolls, chicken, mashed potatoes, and veggies, and cheesecake for dessert. The National Awards were handed out.

I didn't feel like dancing this year, but Charlotte (of course) did. This is the one night of the year where she cuts loose. As I was sitting there watching, I was really surprised when John Elsner (from out 2002 ride) came in and sat down next to me. He had driven up from the Milwaukee area for a frisbee tournament and stopped by to see folks he knew with HDSA connections. Nice to see him.

Didn't stay up late this year - went upstairs and got ready for bed. Long, tiring day, with a long day ahead tomorrow.

With love from Minneapolis,
Marie


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