December 2009 E-Newsletter - PAN in Connecticut

This column is normally reserved for individual recognition of one advocate, but the advocates in Connecticut, led by Co-State Coordinators Robert Mandelkern and John Zakarian and Parkinson’s advocate Steve DeWitte, deserve group recognition.

Rep. Chris Murphy (CT–5) presented Steve DeWitte with a Certificate of Special Recognition for the efforts of the Parkinson Young Onset Support Group.  John Zakarian (far left) and Robert Mandelkern (far right) serve as PAN Co-State Coordinators for Connecticut.

“We don’t do it alone,” Zakarian shared.  “PAN advocates in Connecticut are closely aligned with the American Parkinson Disease Association (APDA) and over 20 Parkinson’s support groups.  When an important bill related to Parkinson’s disease comes before Congress, a wave of e-mails and calls are made by people with Parkinson’s and their family and friends to their elected representatives.”

PAN advocates in Connecticut measure their success based on legislative support related to finding a cure for Parkinson’s disease.  That support has been plentiful on both a state and national level.  “We are very proud of our elected representatives, and grateful for the energy that is dedicated to Parkinson’s disease initiatives,” said Zakarian.
Historically, one of the most gratifying achievements was the successful passing of Public Act 05-149.  “An Act Permitting Stem Cell Research and Banning the Cloning of Human Beings” was approved by the Connecticut General Assembly and signed by Governor M. Jodi Rell on June 15, 2005.  Passage of the Act positioned Connecticut as just the third state in the nation to provide public funding ($100 million over ten years) in support of human embryonic and adult stem cell research.  A State Senator at that time, Chris Murphy (D), along side Mandelkern (who serves as a state appointed official on the Stem Cell Research Advisory Committee, which awards the funds under the state law, and has thus far voted to fund $40 million worth of research in Connecticut) and other advocates, convinced Governor Rell to sign the historic bill, which helped spirit stem cell research efforts at the University of Connecticut-Farmington and Storrs, Yale University, Quinipiac University, and several other state research centers.

On October 17, 2009, members of the Parkinson Young Onset Support Group (PYOSG) of Connecticut celebrated their third anniversary at the monthly meeting.  The Support Group, founded and led by DeWitte, featured a guest appearance by now U.S. Congressman Chris Murphy (CT-5), a member of the Bicameral Congressional Caucus on Parkinson’s Disease, and PAN Coordinators Mandelkern and Zakarian.  PAN and its advocates in Connecticut are grateful to Rep. Murphy for his continued support of issues affecting the Parkinson’s community as a member of the Caucus.

Rep. Murphy’s meeting with PYOSG included a presentation to the group of a Congressional Certificate of Special Recognition.  Rep. Murphy’s presentation of the certificate was preceded by remarks relating to the elements of the various health care reform plans which provide the most hope for a cure and better care for those living with Parkinson’s disease.

DeWitte first reached out to Rep. Murphy in the summer of 2008, at the urging of PAN.  “The PAN newsletter said, ‘Get in touch with your representative during the August Break,’ so I did,” said DeWitte.  He was amazed at the professionalism of Rep. Murphy’s staff, and how accessible Rep. Murphy was to one of his constituents.  “We first met in a coffee shop following a local parade.  It doesn’t get any folksier than that.”  DeWitte was impressed at Rep. Murphy’s knowledge about Parkinson’s, but more importantly, Murphy wanted to learn more.

DeWitte was diagnosed with Parkinson’s disease in March 2005 at the age of 48.  “Parkinson’s disease is often thought of as a disease for more senior adults,” said DeWitte.  “But of the over 1 million Americans diagnosed with Parkinson’s disease, more than 15 percent of all those living with the disease are under the age of 50.”  As part of his insatiable interest to learn more about his disease, Steve has been active with PAN, APDA, the Parkinson’s Disease Foundation (PDF), and The Michael J. Fox Foundation for Parkinson’s Research.

PYOSG facilitates dialogue between Parkinson’s patients who face challenges unique to those living with the disease at a younger age.  The group setting allows them to exchange on subjects such as disclosure, workplace challenges, raising a young family, and relationships.  Credentialed guest speakers are invited to address these subjects and many others, including the latest in treatments and advocacy in the Parkinson’s disease community.

DeWitte, Mandelkern, and Zakarian expressed appreciation to Rep. Murphy for his support of numerous Parkinson’s disease-related initiatives.  Rep. Murphy currently is a co-sponsor of the National MS and Parkinson’s Disease Registries Act (H.R. 1362/S. 1273), now before the House of Representatives.

Visit the PAN In Your State page for more information about advocates in your area.

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