Connecticut Parkinson’s Working Group

Minutes of 22 July 2000 Meeting

Our 22 July 2000 meeting began at 1 p.m. in Haviland Hall of the Connecticut Valley Hospital in Middletown. Through the cooperation of Al Michaud, Chief of Rehabilitation and others on the hospital staff, we had the use of three well-equipped, spotless meeting rooms, all at no charge to us. We decided to accept CVH’s invitation to hold subsequent meetings there. Stan and Jackie will make the arrangements with CVH, and will also pursue the suggestion of joint ventures between CVH and our Parkinson’s community.

Barbara Fussell of the Yale Movement Disorders Center gave us an overview of the Center and the PD research they are conducting. In the past 7 years the Center has grown from a staff of 2, Barbara and Dr. Ken Marek, to a staff of 14. The research programs they are currently involved with focus on 3 areas - neuroimaging, clinical drug trials, and genetic studies. Regarding the clinical drug trials, Barbara explained that recruitment for them is sometimes difficult because of the eligibility requirements imposed. The studies frequently need newly diagnosed patients with a history of no prior PD drug treatment. The trials include the process of new ways of looking at old treatments (apomorphine), neuroprotective processes (riluzole), and unique delivery systems (agonist patch, sublingual apomorphine, liquid sinemet, subcutaneous injection of apomorphine). They are also conducting research on an immunophylin compound which may regenerate the growth of dopamine cells.

“Progeni” is the genetics study of PD which is looking for sibling pairs who have PD, or who are at risk of having PD. This is a non-invasive study, requiring a family medical history, blood work, and neuroimaging. The nationwide study is trying to determine if there is a genetic component to PD.

The neuroimaging process using Spect imaging or scanning is designed to look at the dopamine neurons in the basal ganglia over a period of time and to determine their status due to PD. Neuroimaging is now also being used in combination with some of the clinical trials.

If anyone is interested in being a part of this research, please contact the Center at 764-9095, and you may also ask to receive a copy of their newsletter at no charge.

Dr. Jim O’Malley of Pfizer Central Research in Groton spoke on the research being done on stem cells. Stem cells are the not-yet-programmed cells of the body. The excitement over these cells is that theoretically they can become cells of various body parts and organs. This is especially important to the PD community, since PD is the progressive loss of a finite population of specific cells. There are stem cells in embryos, human and other mammals. What Dr. O’Malley considered more exciting is the discovery that we all have stem cells in our own bodies, in small numbers, but nonetheless accessible. If our own stem cells could be harvested many current problems in stem cell research and use would go away, such as the moral issue of using aborted fetuses, the cross-species problems of using, for example, pig stem cells, and all concerns about immune system response since the cells would be our own.

Thus research must be carried out to separate stem cells, culture them, and deliver them to the systems (substantia nigra in PD) that need them. Dr. O’Malley feels that private industry has a central role to play in this research.

Dr. O’Malley mentioned that our group can be a positive influence on continued stem cell research because we are a group of patients affected directly by the research. He suggested that we keep up with the literature, contact the research companies directly, and advocate for governmental support.

Our ‘seventh inning stretch’ included a brief introduction to yoga by Judy Iovanna, a PD patient who also teaches a yoga class in Meriden. We then discussed the need for advocacy, which will be the topic of our next meeting in October, just in time for the elections. Stan and several others will discuss our role and avenues for effective advocacy. To this point Stan passed around a letter for us to sign if we choose, addressed to Senator Lieberman supporting more funding for PD research.

Our newsletters will be published 3 weeks prior to pending meetings, and we envision it as a collection of member’s submissions. Anyone interested, please contact Stan. If you received a damaged copy of the first newsletter and would like another copy, please contact Jackie. Novartis Pharmaceuticals has given us $150 towards the publication of our newsletter, with our thanks to Joe Cretella for arranging this donation. We still have other expenses, and to help defray these, a basket was/will be out at every meeting for donations to cover our ‘expense account.’

Tim Foley has almost completed our CPWG web site and the address will be available shortly. Donna Diaz and Gladys Tiedemann have been working with 2 SCSU graduate students on a Connecticut ADPA web site which is also about ready. We will be able to keep in touch and stay informed more easily.

Our meeting schedule and agenda was discussed. Meetings on Saturday afternoons were deemed suitable, as unfortunately nothing will please everyone. Our upcoming October meeting will focus on advocacy and the political arena. The Spring (April?) meeting will be on support groups, and our guest will be Dr. Ellen Cohn, a professor of psychology at the University of New Hampshire who is doing interesting research on this and related issues. Caregiving/carepartnering may also be covered. The topic for our Summer (July?) 2001 meeting will be the whole issue of disability, social security, job re-training, and programs to assist us. Our collective thanks to Brian and Sally Clark for the refreshments. The meeting concluded at 3:30 p.m.

- Jackie Dorwin