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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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn