Tuesday, February 10, 2009

MJFF Research Roundtable

Yesterday Oli and I attended the Atlanta round Table discussion held by MJFF.
In attendance were an estimated 40 persons. Some Doctors, Scientists, patients and folks like us, interested in understanding more about the foundation and it’s progress.

Oli and I arrived in Atlanta around 2 in the afternoon. We went past the Underground and the new shopping center where the Ikea store is. We drove down Peachtree noting people’s reactions to seeing a time machine drive by. It was fun. We then pulled into the drive of the Hyatt where the round table was being held. The car is a magnet for attention. Folks walking by stopped to take photos. Patrol cops came over to make sure we were okay. The hotels employees all came out to see the car. The Atlanta Magazine’s offices are in the building across the street and we had some fun with them. One fellow (the editor of the magazine), wanted to sit in our car. I answered 'yes if you put $20 in Mr. Compassion', (Mr. Fusion.) He did, and the photo was on their website the next day!

We stayed out front until 3:30 when Oli drove Jack, the parking manager, down to the garage, or ‘parking lobby’ where the car was parked for the evening. Very nice temperature controlled facility, with large automatic doors that sweep up and down quickly, and probably the prettiest lighting we’ve ever seen in a garage!

The meeting started off with a reception. We sat a table with a young couple from Georgia, he an EMT and she a lawyer-to-be. The meeting got started at 6, it was a live webcast. Debi Brooks, cofounder of the foundation, did the introduction and then the speakers each had an opportunity.
The discussions ranged from clinical trials, their outcomes and the route the foundation might follow in the future. We did learn something new about the symptoms and complications of PD. We’re familiar with the physical aspect of the disease, but the panel brought forth the cognitive effects of PD. Depression, apathy and dementia are part of the puzzle.
It’s still a puzzle to me, -and the panel it seems. But they are inspired to continue down each and every avenue that they believe might bring about results which in turn will bring about the elusive cure.

The question and answers from the guests present and from the web continued the discussions of “sham” surgeries, (or ‘simulated’ as I prefer them called) in the double blind trials. Interestingly, we found out that those given a placebo or simulated surgery during a trial will receive the treatment for free if that particular trial proves effective!
Stem cell research, both embryonic and adult, re-programming cells.
Implanting “seeds” to help grow the brain back, needing healthy “soil”, (brain) to grow healthy connections. Mind-boggling? Yet, the evening left me hopeful. Understandably there were a lot of individuals wanting their specific answers. The panel did give general answers, noting that the PD patient must look at their individual health, and specific needs and circumstances. Each patient should speak with their doctor before entering a clinical trial.
Hope is what I came away with. Yes, this was a meeting to inform people that are involved with the foundation. So hope is important, and the MJFF has clear objectives: Drive the best parkinson’s research and deliver improved therapies and a cure.

When Oli and I are on the road and we stop to get gas and people want to take pictures of the car we say Yes! But give hope! We all need hope, and we all can give something!

Debi acknowledged the Team Fox Members present. A gentleman from Atlanta who is a PD patient, and is funding an advertising campaign in the Atlanta area to raise awareness. And Oli and I, the time travelers. I wonder if there shouldn’t be a gathering for Team Fox Members where we can discuss our fund raising strategies. Together we are strong.

1 comment:

Pat Erickson said...

Hi Terry, We attended a roundtable discussion in January. I found it to be hopeful also. I am so thankful for the Michael J. Fox Foundation and all they are doing to find a cure to this disease.