"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
Meet the care partners and their loved ones who are working together with the Parkinson’s Disease Foundation (PDF) to make a difference in the fight against Parkinson’s.
Many care partners have gotten involved with PDF's Parkinson's Advocates in Research (PAIR) program. They are now working on the frontlines with researchers to solve the challenges of Parkinson’s disease. They volunteer as healthy controls for studies, educate their communities about research and advise professionals designing studies.
Kim and Lizabeth Erickson
Lizabeth Erickson and her husband Kim joined PDF’s PAIR program shortly after his diagnosis at the age of 55. Ever since, they have participated in clinical trials together and paired up with researchers at Park Nicollet Health Services' Struthers Parkinson's Center in Golden Valley, MN. They share their knowledge on Parkinson’s research throughout their state at support group meetings, online with PDF, and with the global PD community at the World Parkinson Congress 2013 in Montreal, Canada.
“Sometimes as a care partner, you may feel helpless in many ways, like you can’t do anything. Working with PAIR is something that you can do to cope with Parkinson’s and fight back. It also puts you in contact with other people who are coping with the disease as well,” says Mrs. Erickson.
See the Ericksons in the News
Rosa Kim in memory of her mother
Rosa Kim, a care partner to her late mother who lived with Parkinson’s, was inspired to join PDF’s PAIR program in 2012 to support other families touched by the disease. Originally of South Korea, Ms. Kim has focused her efforts on providing resources to the Korean community on Parkinson’s and paired up with Northwestern Memorial Hospital in Chicago to educate others. In April 2013, she organized a special Parkinson’s symposium, which featured PDF educational resources and experts from Columbia University and the University of Seoul. The success of the event, which drew over 100 people, inspired her to jumpstart a Korean Parkinson’s disease support group.
“I joined PAIR not only to better help my mother, but to help others who may be going through similar situations,” says Ms. Kim.
See Ms. Kim in the News
Don and Terri Ransom
Terri Ransom’s husband Don, a veteran of the US Air Force and former US Postal Service, lives with Parkinson’s disease. The Ransoms underwent training together to join the PAIR program. They have focused their research advocacy on addressing inequalities in research studies, to ensure that studies have volunteers of differing races, genders, ages and geographic areas. For example, they started a website to help educate others about participating in research.
Mrs. Ransom adds, “We want to educate and assist others with Parkinson’s and their care partners by sharing our story, our knowledge, and our experiences. The PAIR training served to reignite that inner fire and my desire to help others with information.”
See the Ransoms in the News
Bernie and Jackie Snead
Myrtle Beach, SC
Jackie Snead is a care partner to her son Bernie, who was diagnosed with Parkinson’s in 2010 at the age of 50. Since joining PDF’s PAIR program, the mother and son team have paired up with the Medical University of South Carolina and hosted educational events with Parkinson’s experts. For Parkinson’s Awareness Month, they recognized clinical trial participants with tulip pins to honor their efforts to bring about better treatments at a faster pace.
“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,” says Ms. Snead.
Jay and Marilyn Phillips, P.T.
Marilyn Phillips, a retired physical therapist, teamed up with her husband Jay, who lives with Parkinson’s, to advance research and find ways to improve patient care. As part of PDF’s PAIR program, Mrs. Phillips helped PDF review research grants as well as shared her expertise to help PDF develop a special course for physical therapists. Together, the Phillips made sure the Parkinson’s community was represented alongside health care leaders at the 2013 Merinoff Symposium in New York where they presented on a panel discussing the potential of telemedicine.
“We have to work together to participate in clinical research and become better educated about the disease. It’s the only way to have medical advances for a cure,” says Mr. Phillips.
See Mrs. Phillips in PDF News & Review
Care partners are some of our most dedicated PDF Champions, hosting unique fundraisers across the US and raising awareness in their communities in honor of their loved ones living with Parkinson’s.
The Chard Family
Sean Wright of Kennesaw, GA, rallied eight family members to fight Parkinson's with the PDF Champions program and run the Marine Corps Marathon 10k together in October 2013 in Washington, DC. Sean's stepfather, Gary Chard of Wilmington, DE, is a PDF Research Advocate who has been living with Parkinson’s since 2008. Gary and the rest of the family were inspired to lace up their own sneakers for the cause after being inspired by Sean’s efforts last year, when he ran 26.2 miles with PDF's team and raised more than $5,000 for Parkinson's research.
"We're trying to show that we're a united front against Parkinson's. As a person living with PD, I have my strong support of my wife and family standing beside me," says Gary, who was especially touched that his 11-year-old granddaughter Aubrey participated in the run.
See Mr. Chard in the News
Cody Ledsworth, 20, a college student in Muskegon, MI, kayaked across the 216-mile Muskegon River in May 2013 to raise money as a PDF Champion. He was inspired to take on the challenge in honor of his grandmother, who lives with Parkinson’s disease, and his grandfather who is her care partner.
“After seeing how Parkinson’s affected my grandma’s speech and mobility and how my grandfather takes care of her, it made me realize that I should dedicate my Muskegon River kayaking trip to benefit Parkinson's research, awareness and help for care partners,” says Mr. Ledsworth.
See Mr. Ledsworth in the News
The DeWitte Family
Kate DeWitte spent her senior year at Shepaug Valley High School helping other students understand how to cope with a loved one’s diagnosis of Parkinson’s disease and raising more than $1,000 to benefit PDF in honor of her father, Steve DeWitte who lives with the disease. Mr. DeWitte is a member of PDF’s People with Parkinson’s Advisory Council and a PDF Research Advocate. Her efforts at school included awareness presentations and creative fundraisers such as selling handmade snowflakes in the winter and hosting Zumba classes.
“When I started to see the progression of Parkinson’s disease in my dad, I wished there was another kid just like me who understood what it felt like to go through the same thing. My primary motivation is to be a mentor for others my age and help with their understanding of Parkinson’s,” she says.
See Ms. DeWitte in the News
The Malstrom Family
Twain Harte, CA
Diane Malstrom and her family care for her 82-year-old stepfather who has lived with Parkinson’s for over 20 years. Her t-shirt design, “Optimism and Hope” came out on top in PDF’s 2012 Parkinson’s Awareness Month T-shirt Design Contest. The design was printed on thousands of t-shirts worn nationwide to raise awareness. She entered the contest after visiting PDF’s website for caregiver resources.
“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,” says Ms. Malstrom.
See Ms. Malstrom in the News