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oh dear, how awful!! thanks John for telling us about Margaret. I only
knew of her via her letter that came with surveys. Lets at least contact
our congresspeople re NIH funding for PD research.
-----Original Message-----
From: John Cottingham
Sent: Sunday, June 30, 2019 11:42 AM
To: [log in to unmask]
Subject: We lost another Kind and Gentle Angel Last December
Margaret Tuchman, co-Founder and President of The Parkinson Alliance,
and Beacon in the Parkinson’s Community
“Margaret leaves an extraordinary legacy of advocacy on behalf of her fellow
patients. She gave endlessly of herself to usher countless individuals into
Parkinson’s activism and engagement. I was one of them, and I will forever
be grateful.”
— Michael J. Fox
Margaret Ujvary Tuchman, of Princeton, New Jersey, and co-Founder and
President of The Parkinson Alliance, a nonprofit dedicated to funding
research for Parkinson’s disease, died of pneumonia Sunday evening, December
16, 2018 at Robert Wood Johnson Hospital in New Brunswick. She was 77.
Margaret was born on November 18, 1941 in Budapest, Hungary. She immigrated
to the United States in 1956, married Martin (“Marty”) Tuchman, a
businessman and entrepreneur, and had a BA in Psychology and an MA in Social
Work. At age 38, Margaret was diagnosed with Parkinson’s. At that time
disease treatment, information, and research was limited. Combining her
thirst for knowledge and passion for helping others, she began a lifelong
journey to shine a light on Parkinson’s. As she learned, she shared, using
early online Internet bulletin board services to connect with people around
the country. Margaret quickly became an expert—a beacon and vital go-to
resource in the Parkinson’s community.
Recognizing there was not enough research funding for Parkinson’s disease,
both Margaret and Marty, along with The Tuchman Foundation, got involved.
Marty joined the boards of the leading Parkinson’s organizations of the
time; they both joined the cause of the Parkinson’s Unity Walk; they were
early supporters of the then newly-formed Parkinson’s Action Network (which
today is operating under The Michael J. Fox Foundation for Parkinson’s
Research); and they were among the several key grassroots advocates who
worked tirelessly to help pass the Morris K. Udall Parkinson’s Research Act
of 1997. But the slow pace of the legislative process to release funds
remained frustrating. That frustration motivated Marty to apply fundamental
business practices to accelerate the flow of dollars into the hands of
researchers. In 1999, they founded The Parkinson Alliance, dedicated to
raising funds for the most promising research to find a cure and to share
educational information to help improve the quality of life for those
suffering with the disease.
When NYC ABC News Anchor and Reporter, Michelle Charlesworth, learned the
news of her passing, she was immediately saddened. “Margaret Tuchman left
this world a better place. She took her diagnosis at such a young age and
turned it into an incredible fight that has helped so many others. She truly
lived a meaningful life with loving and lasting impact.” Pausing, she
reflected and fondly shared that Margaret and her dear grandmother shared
the same name. “So in addition to rooting for her always, when I read or
heard her name, I would always remember that and smile.”
In 2000, ever attentive to new therapies, Margaret became one of the first
people in the United States to have Deep Brain Stimulation (DBS) surgery.
Seeing the need to better inform the Parkinson’s community about the
treatment, Margaret started DBS4PD.org, a website dedicated to DBS
information, education, and, most importantly, surveys designed to give the
patient a voice because she strongly believed that the voice of people with
Parkinson’s and those who love and care for them must be heard. “I have
known Margaret for over 15 years, and she had an unwavering determination to
give a voice to individuals with PD,” said Jeffrey Wertheimer, Ph.D.,
ABPP-CN, Chief Research Consultant and Chief of Neuropsychology Services at
Cedars-Sinai Medical Center, LA, California. “Although she had many vehicles
for assisting the PD community, one of her many legacies is her
patient-centered research, using surveys to obtain patient-reported
outcomes. She addressed the very matters that were most relevant to PWP, and
she had the credibility to give a voice to others. She was a woman with
great knowledge and a psychological altitude that gave and still gives wings
to the spirit. Her words and ideas soared, casting inspiration in far
reaching ways, to others with Parkinson’s, their families, and professionals
in the PD community.” With DBS now well-known, this ever-growing resource is
today part of The Parkinson Alliance website under Patient-Centered
Research.
In the years since its inception, The Parkinson Alliance also took over the
management of the Parkinson’s Unity Walk and Team Parkinson. It hosts
regular events, such as the annual 5K & Fun Run at Carnegie Center and the
Food, Wine, & Maybe Tuscany fundraiser. At this past November’s Food event,
Margaret shared time with her good friend May May Ali, eldest child of
Muhammad Ali, who was the inspiring keynote speaker. “I feel blessed to have
known Margaret and call her a friend. She was a giving and courageous woman
who defied her disease. As her physical movements became slower, her
advocacy to help others was done with speed. As the volume of her speaking
voice lowered, her voice to speak up for the advancement of Parkinson’s
research increased. I will always admire this great woman who lived a life
of service to others.” To date, the efforts of The Parkinson Alliance have
raised over $30 million for Parkinson’s research.
Margaret also enjoyed gardening and flowers, especially orchids, and was an
avid reader on a wide variety of topics. But championing worthwhile missions
was in her soul. She was an animal and nature lover and took pride in
supporting many organizations that fought for the rights of protecting both.
For over two decades she helped fund a ranch in Texas that works with abused
horses. She quietly supported beneficial programs and projects too numerous
to list. At her core, Margaret consistently delighted in helping those in
need while always shunning attention for doing so.
Her favorite musician Leonard Cohen wrote, “There is a crack in everything,
that’s how the light gets in.” Parkinson’s may have been the crack, but
Margaret simply allowed it to spread more of her extraordinary light into
the world to positively affect a myriad of people.
Ever optimistic, Margaret remained deeply involved in the work of The
Parkinson Alliance. She continued to be passionate in finding ways to
improve quality of life and in research that would ultimately find a cure
for Parkinson’s disease. She was in regular communication with doctors and
researchers throughout the country, including an over two decade
relationship with Dr Brian Harris Kopell, who is now the Director of the
Center for Neuromodulation at Mount Sinai Health System in NYC. “She has
always been an inspiration through her own personal courage in the face of
Parkinson’ disease. More impressively, she proved how one person’s
unwavering dedication can leave a legacy of healing for others.”
Margaret was predeceased by her parents, Josef and Margit Ann Ujvary.
Margaret is survived by her husband and partner of 57 years, Marty, their
Coton de Tulear, Mumbo, and African Gray, Lori. She is also survived by her
cousins, Michael Erdely and George Airday, and many friends who deeply love
her.
In keeping with her wishes and generous spirit, Margaret’s body and brain
were donated to the University of Pennsylvania for Parkinson’s research.
There will be no funeral. We welcome you to honor Margaret and her
passionate work. Memorial donations can be made to The Parkinson Alliance,
Post Office Box 308, Kingston, NJ 08528 or online at parkinsonalliance.org
in her memory.
With a broken heart I say "So long Friend" helping the Parkinsn list from
its beginning.
John Cottingham
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