Meet Your Metro Atlanta Advocates: “Team Georgia” Takes Congress By Storm
Posted on March 16, 2017 | By Larry Kahn | 9 responses
On February 26 – 28, more than 200 advocates from 43 states attended the 2017 Parkinson’s Policy Forum in Washington, D.C., hosted by the Michael J. Fox Foundation (MJFF), uniting the Parkinson’s community to learn about, discuss and take action on pressing policy issues related to Parkinson’s research, drug development and access to health care. At the end the Forum, the advocates participated in a day of meetings on Capitol Hill, where people with Parkinson’s, their care partners and other community leaders made their voices heard so that lawmakers can better understand the perspectives of individuals who live with the disease every day.
Ellie and I were the newest members of the Georgia delegation, which included Emory Movement Disorder Specialist Dr. Joash Lazarus and Parkinson’s patients Carl Bolch, Jr., John Humphreys, Steve McCoy, Nik Roberts, Jennifer Walling and Bill Wilkins. I was encouraged to secure an invitation to the event by a fellow PwP hopeful of elevating coverage of community-based exercise programs adapted for Parkinson’s to a national priority, but the Fox team focused us on a fixed agenda: encourage our legislators to (i) prioritize federal funding for medical research, (ii) protect the critical components of the Affordable Care Act impacting the Parkinson’s community, and (iii) strengthen caregiving in America by supporting the (RAISE) Family Caregivers Act. The primary role of “Team Georgia” was to meet as a group with members of the staffs of Senators Johnny Isakson and David Purdue and local Representatives and tell our stories, relating them to the legislative agenda as much as possible. These stories are affecting, and my biggest takeaway from the event was that the Atlanta Parkinson’s community is represented by a fantastic group dedicated to supporting worldwide efforts to find a cure for PD and keeping those living with the disease healthy enough to benefit when researchers finally hit the jackpot.
The Collaborator: Diagnosed in 2006, W.N. “Bill” Wilkins turned activist in the fight against PD. Among other advocacy causes, Bill is a charter member of the MJFF’s Patient Council and has also been appointed a charter member of Emory University’s Udall Parkinson’s Disease Research Center’s Community Outreach Board. In 2014, he was selected as the recipient of the Alan Bonander Humanitarian Award, which is presented each year to an individual in recognition of their exemplary contribution to the PD community.
Bill has dedicated himself to Parkinson’s causes because “It has given me ‘purpose’ and an opportunity to truly make a difference in people’s lives,” he says.
The Roswell resident has made a real difference in the PD community by bringing an unbeatable enthusiasm and positive attitude to the fight against PD. He has inspired many other people to join the cause and is a strong advocate for collaboration between all members of the Parkinson’s community. Together with fundraising partner Team Cantore, Wilkins Parkinson’s Foundation, which he organized in 2010, has raised over $1.3 million for Parkinson’s research and awareness.
Bill believes that history will view the 2017 MJFF Policy Forum as a monumental move toward unification of the PD community and raising the patient voice through better involvement of the PD patient. As he is fond of reminding other advocates, Bill urges, “We can do more together than apart!”
On A RaceTrac for a Cure: Carl Bolch, Jr., the chairman of RaceTrac Petroleum, Inc., was the second member of the MJFF Patient Council participating on Team Georgia at the DC Policy Forum. Carl’s father, Carl Sr., had Parkinson’s disease, and Carl was diagnosed with PD in 2007.
In April 2011, RaceTrac sponsored an event called “Coffee for a Cause” that donated all profits from the sale of coffee in its stores for a five day period to MJFF. This event, and ancillary fundraising efforts, raised approximately $131,000 for MJFF; and in addition, RaceTrac helped increase public awareness of MJFF and Parkinson’s research by disseminating brochures and information sheets to its customers during this same period. RaceTrac also sponsors an annual “Run for Research 5K” fundraiser in support of the MJFF in Dallas, Tampa, and RaceTrac’s hometown of Atlanta. All proceeds, including 100% of registration fees, will go directly to fund the MJFF. This year’s Atlanta race is on April 29th at the Cumberland Mall.
Carl’s wife, Susan, and their children are proud of their efforts on behalf of Parkinson’s disease, that include making MJFF and Parkinson’s research a focus of their family’s philanthropy.
Playing Her Last Card: Jennifer Walling, a 43-year old Powder Springs mother of two, was perhaps the most effective advocate on Team Georgia. She first started having PD symptoms in 2002 and recently underwent DBS surgery that has not effectively provided satisfactory relief. Her plea to legislators to act quickly to increase federal funding for research was personal and deeply affecting: “I’ve played my last card,” she said.
Jennifer has become involved with the MJFF policy council because “I truly think that as more people become aware that PD can affect anyone at any time, a sense of urgency will lead to a cure,” she says.
Her goal at the policy forum was to remind the legislators that “we are still out here fighting EVERY DAY and that we need the funding for research and other programs,” she says. “Parkinson’s has affected every aspect of my life. It affects every single movement and makes you have to think about each hour.”
While she thinks the Forum went well, she wants to remind her fellow patients that we still need to contact our legislators frequently and stay in their mind.
“It’s never too late to improve or start fighting,” Jennifer says. “I just try to take it one step at a time and be better today than I was yesterday. I have met some awesome and amazing individuals with PD that inspire me and make me want to be better.”
Miles and Miles of Heart: John Humphreys is a tireless advocate for the vast network of friends he has made in the PD community. “[Parkinson’s] has made me a better man by changing my perspectives of what is important in life,” he says. “Even though I can feel the progression it has given me a passion to help people.”
Besides being a MJFF Advocacy and Awareness Volunteer, John is a member of the Emory Udall Patient Advisory Board and is a MJFF Clinical Trial Ambassador, having participated in over 20 clinical trials since his diagnosis nine years ago!
The Canton resident participated in his fourth Policy Forum this year (including those hosted by the former Parkinson’s Action Network, which was recently absorbed by the MJFF). “It was awesome and gets better every year,” John says. “I feel so positive that we are getting closer to a cure and also the very important task of improving the everyday life of people already living with Parkinson’s. It also is incredible the people you meet.”
All heart, John urges fellow PwPs in metro Atlanta to take advantage of the “ideal model for activities within the PD community for the US” but also to take good care of themselves: “Exercise and stretch; make sure you have the very best MDS; become involved and make a team for your treatment; breath deep and stay positive,” he says. “It is your body and you have a part in the decision-making process.”
But John is also a believer in the power of the community to act as one. “Become an advocate,” he says. “Only you can do it and make your voice heard. Register for clinical trials—and talk to other folks about registering whether they have PD or not. Get up and get involved.”
Podcasting in the Morning: A popular morning radio broadcaster in Atlanta since 1981 best known as the co-host of “Steve and Vikki in the Morning,” Steve McCoy was diagnosed with PD ten years ago. Now off the air, Steve still podcasts with his long-time co-host Vikki Locke and has experimented with a Parkinson’s podcast, as well.
After Steve announced that he had PD, he was soon recruited as a goodwill ambassador for the MJFF for the state of Georgia, first participating in the DC Policy Forum last year. He was an effective advocate for Team Georgia this year, observing that he had walked into Johnny Isakson’s office last year but needed wheelchair assistance this year as he combats freezing of gait. “Congress seemed more responsive to healthcare issues this year,” he says. “I think we’ll see some real movement this year.”
Despite his freezing issues, Steve participates in the PD Gladiators at the Y program at the Forsyth Family YMCA in Cumming, proudly noting that it’s the largest YMCA Parkinson’s Movement Class in Georgia. His advice to the Parkinson’s community? “Keep your head up, don’t let this beat you, and keep moving forward.”
Meeting (Up) the Need: Besides being a veteran of the Parkinson’s Action Network and the MJFF policy forums, retired pilot Nik Roberts founded the Georgia Parkinson’s Social Meetup Group in 2014. The group invites the Atlanta Parkinson’s community to attend informal gatherings and encourages members to “meet up” at social and informational events arranged by other organizations. “We hope to promote a healthy, active and social lifestyle for our PWP community,” the group’s web page says.
Nik was the team leader of our half of the Georgia delegation and made us feel welcomed. Besides joining the full group to meet with our Senators’ staffs, we visited civil rights legend John Lewis’s legislative assistant (as well as Tom Price’s empty office, the Representative having already moved on as Secretary of Health and Human Services).
The Researcher: Dr. Joash Lazarus completed undergraduate medical training in his home country, South Africa. Following postgraduate primary care training, he moved to the US to pursue clinical research training at Emory University. His interest in clinical research developed during a postdoctoral fellowship in clinical human genetics/ movement disorders, which motivated him to continue clinical training in neurology with a goal of establishing a career in the field of movement disorders.
Dr. Lazarus has had experience lobbying Congress to fund medical research on behalf of the American Academy of Neurology but elected to double Emory’s influence this year by joining the MJFF effort while a colleague worked the halls of Congress for the AAN. Dr. Lazarus excelled at laying out the MJFF legislative agenda for the staff we visited while positioning the rest of us to tell our stories in a way that emphasized the urgency of the Parkinson’s community’s requests.
Bridging the Gap: Ellie and I are quiet people, far from natural advocates, but we saw a need for better communication between doctors and PD patients about the benefits of exercise, physical therapy, support groups and clinical trials. We put together a team of like-minded individuals to organize PD Gladiators to gain the attention of the medical and patient communities to fill this void. Both doctors and patients are seeing the symptomatic and social benefits of the adapted group exercise programs in the PD Gladiators network, and we hope that the growth in the active PD community will spur conversations about and participation in clinical trials, as well.
We see our role in the community as advocates for “living well” issues, steps the community can take to help people with PD (and their families) stay healthy, bridging the gap until researchers can find a cure. Ellie, who facilitates the Dunwoody support group, told the legislators’ staffs about the concerns of caregivers and how they could possibly be addressed by Congress passing the (RAISE) Family Caregivers Act. I emphasized that those of us with PD did not want to become burdens on our families and the healthcare system; we are working hard to keep ourselves fit until researchers find a cure, but we need Medicare (and private insurers) to eliminate caps on physical therapy and fund community-based exercise programs adapted for PD to support our fight.
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One of the highlights of our trip was meeting Michael J. Fox, who took a “redeye” from Los Angeles after the Oscars to rally the troops before we stormed Congress on Tuesday. Bill Wilkins invited us to a cocktail party on Monday night, and Ellie had an emotional moment with the guest of honor, hugging him (she asked first) and thanking him for everything he’s done in the PD world to change what it means to have Parkinson’s. He hugged her back warmly, and with misty eyes said, “I don’t do it for me, I do it for all of us.”
I think the same can be said for everyone on Team Georgia. Find your own way that works for you, but please think about how you can best add to our community.