NO MORE IRON HALOS - The Joan B. Snyder Story

When I first joined this List in 2000 I sensed that Joan B. Snyder was a 
very important person, but I didn't know exactly why or what the extent of 
her involvement in the Parkinson's cause was or would be. 

One has to visit her website www.calipso-pd.org to get an accurate idea of what could be the script of an Oscar-winning 
movie. Her personal struggle with Parkinson's is one you will identify with 
and her accomplishments as an advocate will inspire you. CALIPSO (Central 
Illinois Advocates for Lives Interrupted by Parkinson Support Organization) 
was founded in 2004 by Joan to facilitate local financing of PD activities.

Joan was diagnosed with Parkinson's disease in the prime of her life, at age 
38 in 1990 right after the birth of her second child, son Mitchell, now 16. 
Husband Stan was deployed to fight in Desert Storm soon thereafter. Daughter 
Allison is now 19 and her almost-adult children have never really known her 
without PD. PD slowly, but too quickly, stole her life.

By 1998 a second disastrous palliodotomy, her mother being diagnosed with PD 
and the knowledge that grandmothers and aunts may have had this same deadly 
disease made her fear for her children. Joan became convinced that if we 
PWPs wanted to change public perceptions of PD, we were going to have to be 
agents of change ourselves if a cure was ever to be found.

It is hard to fight PD and be an advocate at the same time. Nevertheless 
Joan began a new life of raising awareness of PD through events, 
fundraisers, support groups, education and political activism in order to 
lay a foundation for a PD-free future.

This recipient of the prestigious 2001 Sidney Dorros Award for her advocacy 
of Parkinson's awareness and fund raising and the 2002 Illinois "25 Women in 
Leadership Award" for PD advocacy knows the real payoff will come when PD is 
defeated for good.

In April 1999 Joan launched  the first "Awareness Day" with two more events 
to follow in 2000 and 2001. The first one featured an art exhibit of the 
paintings of Jane Scott, who was a caregiver to a father who died of PD 
complications. Anything Joan does has to include good food and music and 
this first event set the tone of all to follow.

One especially interesting undertaking was her Habitat for Humanity Project 
of June 6-12, 2000. Canadian and American PWPs built a house for a disabled 
couple, both who are in wheelchairs, she with MS, he a paraplegic due to 
spinal meningitis.

Voices from the Parking Lot is a great book published in 2000 in which Joan 
co-edited an anthology of some 30 entries of prose and poetry about PD.

The on-line support group "Patients as Providers" was established in 2002.

Three Shake, Rattle and Roll symposiums for PD which consisted of medical 
researchers, neurosurgeons and Patients as Providers took place in 2002 
through 2004 with music and great food.

In 2003 Joan advocated for adult stem cell research with "Open Doors Cord 
Blood Stem Cell Celebration".

She has stumped for fellow PWP former Illinois Representative Lane Evans and 
knows people like Barak Obama.

The www.calipso-pd.org site contains plenty of videos covering about 
everything you always wanted to know about PD. The latest is "It's Not a 
Death Sentence....It's a Life Sentence."

Since she started Calipso in 2004, they have given $18,000 + to Dr. Craig Cady at Bradley University
where he is a well-respected stem cell researcher and professor and $2,000 to 
IPMR (Institute for Physical and Medical Rehabilitation) for them to buy a 
Gaitway Walker that is cutting edge technlogy.  A carpet  tells them just 
where your problems lie.

These leadership positions, events and organizations are only a few of the 
things Joan has done that cover the full spectrum of  her Parkinson's 
advocacy. You must go to www.calipso-pd.org to get the complete story which will help you understand how knowing everybody and doing everything has made her a leader of national and world stature.

In the 1950's it was iron lungs survivors of polio were entombed in for the 
remainder of their lives. In the 1990's and early 21st century it is iron 
halos for people having brain surgery while awake for the Parkinson's 
disease that holds them hostage. Joan's endeavors mean that someday there 
will be no more tremors, tears, dyskinesias, freezings, falls, wheelchairs, 
walkers and iron halos. 

Ray


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