"The truth is that the whole family lives with Parkinson’s disease."
PDF Research Advocate Beth Ann Chard, care partner to fellow advocate Gary who lives with Parkinson's
Meet Care Partners and Families
PDF is proud to partner with care partner teams and family members of people with Parkinson’s disease. In addition to taking on tasks such as coordinating doctor visits, managing financial matters, helping with personal needs, care partners and families also get involved in the fight against the disease.
In fact, more than 50 care partner teams and loved ones currently work with PDF – advising its work through the People with Parkinson’s Advisory Council, speeding new treatments through the Parkinson's Advocates in Research (PAIR) program, or fundraising for research through the PDF Champions program.
Here are a few of their inspiring stories.
The Malstrom Family
Twain Harte, CA, resident Diane Malstrom’s t-shirt design, “Optimism and Hope” came out on top in the Parkinson’s Disease Foundation’s (PDF) 2012 Parkinson’s Awareness Month T-shirt Design Contest. The design was printed on thousands of t-shirts which were worn nationwide during April, Parkinson’s Awareness Month, to raise awareness.
Ms. Malstrom and her family care for her 82-year-old stepfather who has lived with Parkinson’s for over 20 years. She entered the contest after visiting PDF’s website for caregiver resources. When her design was selected as one of five finalists by a committee of judges and ultimately voted the winner by the general public, she was thrilled.
“Winning this contest meant so much because I really wanted to raise awareness not only about Parkinson’s disease but the resources available to caregivers and to show my stepfather how much we love him,” she says.
Christopher and Sandra Herron
Christopher Herron, Ph.D. of Cheyenne, WY was diagnosed with young onset Parkinson’s disease over 15 years ago. Since then, he and his wife and care partner Sandra, have maintained their commitment to civic duty by participating in research studies together. They have diverse professional backgrounds in areas such as psychology and sociology, and have had extensive military careers in the US Air Force and Army. They now work with PAIR to further help make a difference in Parkinson’s research.
As active members of a local support group, they are educating others about local research opportunities and providing tips for individuals who are deciding whether volunteering for a study is right for them. They are also seeking opportunities to guide research locally and nationally, for example by reviewing grants that seek funding to study Parkinson’s.
“The only way to solve a problem ultimately comes from understanding the problem. Participating in Parkinson’s research and educating others about it, is the best gift we in the Parkinson’s community can give society at large to help lessen the effects of this disease,” says Mrs. Herron.
Martin and Gay Lynn Bullock
Martin and Gay Lynn Bullock of Stillwater, OK say they joined PAIR to, “find out what’s going on in Parkinson’s disease research and do whatever we can to promote it.”
Mr. Bullock, who lives with Parkinson’s, is retired after 50 years of federal service that included active duty and reserve time with the US Navy and civilian duty with the Air Force. He and his wife and care partner Gay Lynn, help mentor local Parkinson’s support groups and speak about their experiences as PDF Research Advocates.
“Hopefully our work will lead to curiosity to learn more about Parkinson’s research and the results of research efforts. I think the individuals with Parkinson’s need to be involved in some way,” says Mr. Bullock.
Bernie and Jackie Snead
Mother and son team, Bernie and Jackie Snead of Myrtle Beach, SC created an educational forum for the community to mark Parkinson’s Awareness Month in April 2012. Working with PDF and the Medical University of South Carolina, they hosted a “PAIR Up for Parkinson’s Research” Forum.
Bernie was diagnosed with Parkinson’s in 2010 at the age of 50, although he struggled with his symptoms for several years before receiving a diagnosis. Since his diagnosis, he and his mother have been actively educating the public about science and the benefits of clinical trial participation.
Their Parkinson’s Conference included educational presentations by movement disorder specialists. Myrtle Beach Mayor John Rhodes signed a proclamation declaring April as Parkinson’s Awareness Month. The event also honored people who had taken part in clinical trials to advance treatment of Parkinson’s by presenting them with tulip pins, the official flower of Parkinson’s.
Ms. Snead remarked on their work to make a difference, “The same type of medication is being given today that was given 40 years ago. The advancements made in Parkinson's treatments for a cure or slowing of the disease have not been changed a great deal. This is something that needs to change.”
Jay and Marilyn Phillips
Jay Phillips of Summerville, SC, a retired certified public accountant and Vietnam War veteran, was diagnosed with Parkinson’s in 2010 at the age of 61. He and his wife and care partner Marilyn have been actively raising awareness about research to find a cure ever since. They work with PAIR to share their knowledge and experiences with others and learn more from leading experts about the disease.
“It seemed like a natural fit to participate in PDF’s training to be on the forefront of knowing what information is out there and learning how to promote the research that’s ultimately going to help everyone with Parkinson’s, and hopefully soon enough for my husband,” says Marilyn.
The Phillips are working with local support groups to ensure they have the latest information available on nearby research studies. Mr. Phillips is also signed up to the Medical University of South Carolina’s brain donor program to contribute to their Parkinson’s disease research.
“One of the biggest problems is getting people to come forward and take clinical trials. I would really hope there are better treatments that will be available in my lifetime. We have to work together to get these trials done and become better educated about the disease. It’s the only way to have medical advances for a cure,” says Jay.
Ashley Garrett, of Pensacola, FL ran the 2012 Rock ‘n’ Roll Denver Marathon in September to honor her best friend, Randi Schultz of Denver, CO who was diagnosed with young onset Parkinson’s at the age of 36. Working with the PDF Champions program, she raised more than $2,100 for PDF. She chose to travel to the Denver marathon so that her friend could cheer her on.
Ms. Garrett remarks, “Randi is a big part of who I have become today. She is proud and humbled that I endeavored to take this on and I hope that by running, I will raise awareness about young onset Parkinson’s.”