Upcoming Forum To Highlight Parkinson's Advocacy

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The Parkinson's Action Network (PAN) will host its annual Research & Public Policy Forum on March 15-17 in Washington, D.C. It's a chance for one of PAN's state coordinators to continue an advocacy she bolstered with her wildly successful book.

The Parkinson's Action Network (PAN) will host its annual Research & Public Policy Forum on March 15-17 in Washington, D.C. It's a chance for one of PAN's state coordinators to continue an advocacy she bolstered with her wildly successful book.

Kay Mixson Jenkins is the south Georgia state coordinator for PAN and the founder of Parkinson's in the Park. She is also a published author whose book, Who Is Pee Dee? Explaining Parkinson's Disease to a Child, was recently purchased for overseas distribution.

The book follows a boy named Colt and his toy panda bear, Pee Dee, as they seek to understand the chronic illness and its effects on Colt's mother. The book has drawn praise from Parkinson's advocates and patients alike.

"I've heard from people all over the country who have told me that prior to reading the book, their children never asked them about their Parkinson's," says Ms. Jenkins. "I had one gentleman call me from Illinois to tell me that his godson had bought him a stuffed bear to comfort him during a hospital visit."

Ms. Jenkins says the forum is a good way for Parkinson's patients to lobby their representatives, a battle she says sometimes feels hopeless.

"We've struggled for years to convince our legislators to dedicate more money to research," says Ms. Jenkins, "They've watched us just deteriorate each year and you can't move them."

Ms. Jenkins will not be attending the PAN forum in Washington, D.C. because her husband is battling cancer. It will be the first time she has missed the event since 2002. Ms. Jenkins was diagnosed with PD at the age of thirty-four and has been an advocate for research and patient support since then. Her book, which was published by the pharmaceutical company UCB, has gained a following among families touched by the disease.

Who Is Pee Dee? includes resources for Parkinson's patients and valuable lessons for their children, including:

  • An easy-to-understand explanation of the disease
  • Examples of how loved ones might be affected by the disease
  • Encouragement and reinforcement that the children have done nothing wrong
  • Fun ways in which children can help their loved ones feel better

"There will be five advocates from Georgia going to the forum," says Ms. Jenkins. "We're going to keep trying to change the legislators' minds."

Kay Mixson Jenkins is the Georgia state co-coordinator for the Parkinson's Action Network, leads the Effingham County Parkinson's support group and was selected as a Parkinson's patient advocate for UCB, Inc.

For more information, contact the author directly via kmj@ParkinsonsInThePark.org.

(Who Is Pee Dee? Explaining Parkinson's Disease to a Child by Kay Mixson Jenkins; illustrated by Richard Morgan; ISBN: 978-0-9819129-0-5; $12.95; 33 pages; 8" x 8"; hardcover; UCB, Inc.)

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