Claire Salamon is my "virtual" Red Lobster luncheon companion.  She is a 
very special lady who has been an unrelenting advocate for people with 
Parkinson's disease. If after reading her story you want to help her causes 
by writing letters, please email  me [log in to unmask]

Claire's Parkinson advocacy began in 1997 when she met Barbara Schirloff at 
a PD support group meeting at the Robert Wood Johnson University Hospital in 
New Brunswick, New Jersey.  This led to lobbying for the Mo Udall Bill in 
Washington, D. C. where she met Joan Samuelson and others who were there 
when the bill was passed.

In 1998 Claire volunteered for the Parkinson's Unity Walk in New York.  She 
and her children, Susan and Eric, had the job of setting up and taking down 
about 200 folding chairs.  The jobs changed each year thereafter and led to 
public announcements on the radio. Claire disseminated Parkinson's Unity 
Walk brochures even out of state.  The highlight of her volunteer work with 
PUW was in helping nationally-renowned science and health writer  Earl Ubell 
publicize the Parkinson's Unity Walk.

Claire became a Board Member of the New Jersey Chapter of the American 
Parkinson's Disease  Association as Second Vice President in the late 
1990's.  Today she is First Vice President.

Being a guinea pig in a drug trial can be dicey.  In 2000/2001 Claire was a 
participant in the famous aborted Amgen AMG 474 clinical study to test the 
safety of the drug.  She was only involved for six months and reports signs 
of trouble with the trial in that she had a bug (a gnat or fruit fly) baked 
in one of her pills and received a questionnaire for a different disease 
than Parkinson's.  She wondered who was in charge and wasn't told until 
after a year after the study that she had had the highest dose of 
medication.  It was also impossible to get a civil response from Amgen to 
her many questions.  Nevertheless, she participated in three more clinical 
studies and was one of  four recipients of The Excellence in Service Award 
from the Robert Wood Johnson University Hospital  PD Info and Referral 
Center.

In addition to having Parkinson's, Claire has been hospitalized for several 
surgeries including spinal cord injury.   She learned first hand what most 
of you already know:  there is a great need for education of professional 
healthcare and civil service providers regarding treatment of Parkinson's 
patients.

With the help of Ivan Suzman and Lillian Scenna, Coordinator of PD Info and 
Referral Center in Maine, Claire developed a PD Bill proposal based on the 
Maine model.  Two members of her local assemblyman met with her, went over 
the proposal, but kept putting her off.

It wasn't until 2003, when she became a member of Sayrevillle's Commission 
for the Disabled attending one of the organization's meetings, that she met 
a State Senator who seemed receptive to helping her with the bill.  Two 
months later his office called her and told her she had not been forgotten 
and to call them if she didn't hear from them in two months.  When she 
followed up, Claire was given the "don't call us, we'll call you" treatment 
by a smart-mouth young (?) chick.  That was two years ago.

Despite the inaction and rudeness of this State Senator's staff, Claire got 
invited to parties highlighting stem cell research and the governor's 
election in 2005.  She met some great people such as Dr. Wise Young, stem 
cell scientist, US Senator Frank Lautenburg's executive staff,  New Jersey 
Governor Corzine, and most importantly, Congressman Rush Holt, who was 
PD-knowledgeable and eager to listen and help.

 A2007 is presently on hold in the Office of the Commission of Health and 
Senior Services. This bill contains a provision that would make training about recognizing Parkinson's disease symptoms mandatory for police officers who answer 911 calls.  Claire is trying to convince the Chairman of this 
commission to take action now and put this bill on his agenda.  She is also 
working with Meg Duggan of Missouri to make Meg's Parkinson's Disease 
Education Kit for Healthcare Professionals available throughout the U.S. and 
Claire's Parkinson's Disease Public Awareness and Education Act  A2007 legal 
nationally.

Claire had an idea for a US Postage Stamp about three years ago.  Her idea 
is being considered.  But nothing is easy for Claire.

Her proposal asserts that  "Awareness is the basis for knowledge in 
understanding an indivivdual with a chronic, incurable illness that 
eventually brings about disabilities to the patient and severely impacts his 
entire family.  Funding is essential for the research that gives us hope for 
cures.  It is important that the public recognize and respect people wih 
disabilities.  I have never seen a postage stamp dedicated to honor the 
people that must endure thse nasty, horrific diseases and injuries."

There would be 4 stamps:  ALS (Lou Gehrig's Disease), Huntington's Disease, 
Parkinson's Disease, Spinal Cord Injuries.

Currently Claire is writing yet another letter to Assemblyman Herb Conaway, 
Chairman of the Commission of Health and Senior Services, telling him that 
she and friends wish to be present at the Commission hearing for A2007 to give 
testimony of true life and death stories, unnecessary anguish and pain a PD 
patient and family endured due to the "innocent" ignorance of a 
professional healthcare provider.  

It is easy to give up when your objectives are not fully realized.  It is 
harder yet to keep trying, especially when, like Claire, you have 
Parkinson's disease and your mother was diagnosed with a mild form of PD in 
2000.  Her unwillingness to give up neither her sense of humor nor her 
crusade to better the lives of people with Parkinson's disease makes her a 
formidable fighter not only for herself, but all 1.5 million of us.

Ray 

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