Really did "sleep in" this morning until about 6:00. So nice to sleep on fresh clean sheets!

Got a cinnamon raisin bagel from Einstein Brothers,.

The Opening Session started at 9:00 a.m. We were welcomed to Jacksonville by John Smith, ( President of the Northern Florida Affiliate), a representative from the Mayor's office, Rep Reggie Fullwood (from the Florida House District 13), Steve Seekins (the Chairman of the HDSA Board), Louise Vetter (CEO), and Ted and Carol Montgomery from the HD Community. We were told that Jacksonville encompasses 840 sq. Miles and is the largest city by area in the continental U.S. It is a business city and port, and of course a tourist attraction with the beaches.

2013 is the 20th anniversary of the discovery of the gene which causes HD. We were updated that the HD bills in the US House of Representatives and the Senate have 57 co-sponsors and 5 co-sponsors respectively.

Conventions are like the little ditty "Make new friends and keep the old, one is silver and the other gold." There aren't as many "old timers" attending from the early 2000's. I guess, too, in recent years, I haven't made as many new friends at the Conventions.

Louise filled everyone in on the new strategic plan. She also mentioned that now both Juvenile HD and adult onset HD are included in the Compassionate Allowance, reducing the waiting time from 2 years to 2 months. HDSA is also funding monies for young researchers who are being mentored by more established researchers through the Don King Scholarship. She also stressed how important it is for people to volunteer to be in the clinical trials. Five new chapters/affiliates were added since the Convention last year. She mentioned "Hope & Health" as a buzz word, as the promise of HDSA to families. Through lots of effort, HD is being raised out of the "orphan disease" category to something more commonly known as Parkinson's, Alzheimer's, etc.

After the break, the Keynote Speaker was Dr. Mark Holder, PhD from The University of British Columbia, who spoke on "The Science of Happiness." He cleverly reported on what makes people happy, and what doesn't. Money does make a difference with people whose income is less than $70,000 but over that, it doesn't seem as important. There doesn't seem to be any correlation between education and happiness. Beauty is not strongly linked to happiness. Gender doesn't seem to be a factor, nor is age, or having children. WHAT DOES CONTRIBUTE TO HAPPINESS? Genetics, active leisure, spirituality, friends and family, a happy marriage, having a couple of people that you are certain you can trust, volunteering, and keeping a Gratitude Journal where you list three things each week that you are thankful for (and don't say the same thing each week.)

There was a nice HDSA Chapter and Affiliate Awards Luncheon. I sat with Nancy Goldring and her younger son Greg, from North Miami Beach. I have known Nancy since 1998. Her dear husband Barry passed away with HD. She has been a faithful supporter of "Bike for the Cure" over the years.

Two afternoon sessions. Both Sherri and I attended the "Behavior and HD" session, which dealt with Unawareness and Apathy. Good question/answer component. I attended the JHD session led by Dr. Jane Paulsen. Lots of materials were passed out to aid parents whose child has Juvenile HD.

After dinner on our own, the last activity of the day was the National Youth Alliance Talent Show which raises money for HDSA Convention Scholarships for young people between 9 - 29.

The first day of Convention is now completed, with one more full day to go.

There are over 700 people in attendance, including 250 first timers.

With love from Jacksonville,
on the Riverwalk near the St. John’s River,
Marie