Posted by JF&CS
Attendees of the Parkinson’s Awareness Day event at the Massachusetts State House, sponsored for the fifth year by the Honorable Diana DiZoglio, State Senator representing the 1st Essex District.
We are excited to announce that Ken Bernstein, a longtime member of the JF&CS Tremble Clefs choral group, has been honored with the 2019 Cindy Lyn Moir Outstanding Achievement Award. This annual award is given by the Massachusetts Parkinson's Disease Advocates, an offspring of the Michael J. Fox Foundation's Public Policy arm, to recognize an individual for dedication to the Parkinson’s community. The award was officially presented on April 11, 2019, World Parkinson’s Disease Awareness Day, at the Massachusetts State House.
Ken Bernstein, who lives in the Boston area with his supportive wife Gail, has spent decades as a pioneering advocate for those with Parkinson’s disease. Diagnosed with Parkinson’s as a young man, Ken founded the first support group in New England for those with young onset PD and started a Parkinson’s newsletter playfully titled “Young and Restless.” In addition to working in New England to build a stronger affiliation among people dealing with the challenges of young onset PD, Ken also reached out to groups in other countries facing the same problems.
In 1985, Ken made history when he launched The Parkinson’s Web, the first web-based comprehensive information resource for people living with Parkinson’s disease. With support from Dr. Anne Young, Chief of Neurology at Massachusetts General Hospital, and IT technical assistance from John Lester, Ken helped provide valuable information about Parkinson’s to people all around the world. Other key contributors to The Parkinson’s Web included Boston University professor Terri Ellis, Harvard Medical School professor Peter T. Lansbury, Boston Medical Center nurse Cathi Thomas, Dr. Marie Saint-Hilaire, and Dr. Robert Feldman.
Ken served on the board of the American Parkinson’s Disease Association, which awarded him the Community Service Lifetime Achievement Award in 2010 in recognition of his many contributions to supporting individuals with Parkinson’s, their families, healthcare providers, and scientists.
Along with his advocacy work, Ken said that he has been able to keep a positive attitude by singing with the JF&CS Tremble Clefs, a weekly choral group in Newton for those living with Parkinson’s disease. Ken said that joining the Tremble Clefs allowed him to feel that he could be “more accepting and comfortable [with PD]…I thought, ‘these are my brothers and sisters,’ and so it went from being a negative to a positive.” Marilyn Neault, a fellow Tremble Clefs singer, said that Ken is well known in the group “for his creativity and his mischievous wit.”
Marilyn Okonow, the volunteer conductor of the Tremble Clefs, agrees that Ken has been a tremendous asset to the group, saying, “Not only does Ken share with us his incredible sense of humor and brilliant mind; the fact that he has been living with Parkinson’s for so long and retains his positive outlook on life despite his health challenges is an inspiration to us all. He is a beloved member of our Tremble Clefs family.”
Everyone at JF&CS joins Marilyn Okonow and the Tremble Clefs in extending a heartfelt congratulations to Ken for receiving the Cindy Lyn Moir Award and for his remarkable work in the Parkinson’s community.
The Tremble Clefs choral group is part of the Charlotte & Richard Okonow Parkinson’s Family Support program of JF&CS. Specializing in helping those with Parkinson’s live full lives, our program provides arts-based therapeutic activities, education, resources, and a supportive community.