The rest, then West

We're really lucky to have some extremely dedicated leaders in our chapter. Support group leaders spent Sat and Sun buzzing from workshop to workshop, making sure not to overlap, and picking up extra handouts to share. National was kind enough to honor them at a luncheon and all told me they enjoyed them speaker, who, when I saw, had the furiously playing word games. Here's some more video samplings of workshops:
Elaine Furst on sexuality
Yoga for Scleroderma

I'm also very happy that our chapter was able to fund two scholarships and send two patients to conference to learn more, meet others, and make contact with the great docs and other practitioners. They were both very pleased with the experience and, I'm guessing, would like to participate more.

The awards dinner was a good time for the "Ohio Gang." We learned that chapters had donated an additional $445,000 to research, over and above their usual giving, so the SF is on track again to award another $1 million in funding. It's a little scary to know that many of our greatest doctor-researchers are close to retiring, but one of the best things that the SF grants has done is get new, young researchers interested in scleroderma. NIH funding is being cut due to other national priorities, and scleroderma is already off their radar and budget in some areas. New ideas and methods of getting the scientists and the money for the cure is vital, and I heard lots of talk from very energetic and dedicated people all weekend on just how to accomplish that.

One of the most memorable awards for mewas to Len Johnsen of the Delaware Valley chapter for spearheading the partnership with Nascar Busch racer Kenny Wallace. 1.1 million pocket race schedules are in AutoZone stores with the Scleroderma Foundation logo, and the logo appears on the car and on Kenny's uniform (left shoulder.) Big-time awareness for scleroderma. Len's sister-in-law has scleroderma, and he got involved when his wife, Pat, first volunteered and then became executive director of the chapter. The other award was Rosemary Markoff, executive director of the Tri-State chapter. Rosemary also started as a volunteer, and is a patient. Don't know where she gets it, but she has abundant energy and puts it all into her very successful chapter. She has amazing creativity and dedication, and this is all wrapped up in a compassionate and gentle person who I've never heard speak ill of anyone. She's always positive and is a listening pro. She's a role model and an icon in the Foundation, but you'd pick her out of a crowd not for how loud and forceful she is, but how well she listens, and the measured and thoughtful way she speaks.

The final keynote address by Dr Furst was very informative about recent and past research, and was super hopeful for the future. For him, scleroderma is currently treatable, though many treatments that show early success need more study Not all treatments work for everybody (as with any other disease and drug,) and the benefit-risk balance always has to be considered. He spoke on the collagen trial I participated in, which holds some amazing potential as a cheap, safe treatment for later scleroderma. Most studies up to it were for early scleroderma, so this is a whole new path for a huge group of patients. More research is needed, and I'm participating in that, too, since after the blind was removed it showed that I did actually take collagen and not placebo.

At the end, everyone left with their brains and notebooks full and with hearts hopeful for the future.

I slept a whole 4 hours before we checked out early and hit the road. It was blazing hot in Minnesota and promised to be blazing hot the rest of the day. Our goal was to hit Rapid City by evening with a few side excursions. More on that next time.