Who We Are
The CPWG is, as the name suggests, a group of people with Parkinson's disease (PWP), mostly from Connecticut, who wish to work to help others in the PD community do their job better. We are also definitely a support group in every sense. From our inception in 2000 we decided that we wanted as many of the people doing the work to be PWP. Over the years we have been told by doctors and others that we are rare among PD groups, some think unique, because we do as much as we do with PWP running things. The implication there is also addressed by the very existence of CPWG!
We support and applaud the support group, which serves so many by carrying out an essential function; hence we also function as a bona fide support group. In addition we have promoted the participation of folks in clinical research by: holding information sessions for the public on clinical trials, both independently and in collaboration with the Institute for Neurodegenerative Disorders (IND) in New Haven; meeting with health care professionals (doctors, nurses, VNA) at hospitals, rehab centers, and such around the state; meeting with students (undergraduate, pre-med, medical); organizing a forum on clinical trials led by four leading workers in the field, which was attended by 200 people. We are also a Partner of PDTrials, the leading organization concerned with trials in PD
The Parkinson Disease Foundation, a pre-eminent national PD organization, recently listed us as one of three principal resources in the state. We held a symposium on the state of PD research, which attracted 500 people and was presented by four internationally, celebrated researchers. Most recently we have, with the help of the Mark Morris Dance Group, promoted PD and Dance by sponsoring two classes (New London, Middletown) of dance for PWP at no cost - a conjunction that has been shown to greatly benefit the participant.
We maintain a library of resources for our members, present important topics for education and discussion by members, and provide a monthly meeting for PWP and their partners around the state at which, we have found, anything is up for discussion - and we mean anything. We schedule meetings around the state to introduce ourselves to those who may not know of us, and who might find what they need by joining in; we also have small breakfast gatherings, scheduled golf groups (regularly), and small focus groups that meet when the need is there (such as a men's discussion group which met in several different spots in Connecticut).
We publish a newsletter that is "must" reading, many tell us, five or six times a year. In these and other ways we help People, doctors, pharmaceutical companies, and other committed organizations do their work better. So, even though we are not a group that conducts Walks and other types of fundraisers, we contribute to the education and betterment of the groups we do serve.
The mission of the Connecticut Parkinson's Working Group is to provide education and support to those affected by Parkinson's disease and to collaborate with the medical community to enhance treatment and research of Parkinson's disease.
CPWG started in 1994...
under a different name and different auspices. It was called the "Young Parkinson's Support Group", had no homebase, and had about a dozen members. It was started in collaboration with the APDA and Donna Diaz, in New Haven.
Significant was that it was statewide, published a newsletter, concentrated on issues of younger people, and considered action as part of its mandate.
It grew to about 60 in the two years it existed. The group was suspended in 1996 due to demands on the leader's time that were excessive.
In 2000 the CPWG started up with two co-leaders, one of whom was the originator in 1994. Its mandates remain close to the original ones.
At this time we are unaffiliated and have obtained tax-exempt status on our own. Our mailing list exceeds 400 with about 80 active members. We have received many grants from both national PD organizations (e.g. PDF, PDTrials) and pharmaceutical companies (e.g. Pfizer, Schwarz Pharma, Medtronic); have an active outreach program with information sessions being given around the state to newly diagnosed people, medical professionals and visiting nurse groups; and have organized and conducted statewide gatherings for the purpose of educating health care professionals and the public about PD. We are also a caring group that provides internal and external support and understanding to those who join us.
The CPWG has myriad projects both underway and in the process of being formed. It is for anyone with PD who wants to be involved in doing something to further research, dissemination of information, and be active in a vibrant support group.
Board of Directors
|Lisa Burtt||newsletter firstname.lastname@example.org|
|Dave Curtin||information email@example.com|
|Tess Deshefy-Longhi||medical firstname.lastname@example.org|
|Kendra Hough||newsletter email@example.com|
|Judy Iovanna||member firstname.lastname@example.org|
|Pat Sullivan||recording email@example.com|