Parkinson's Disease Diplomat Program
The VCU Parkinson's and Movement Disorders Center and Power Over Parkinson's are pleased to announce our newest collaborative endeavor: The Parkinson's Disease Diplomate Program (PDDP).
Through this program, we hope to raise awareness about how advocacy work can make life better for people with Parkinson's. Each month, we will select a single nominee who is working to improve the lives of other people with Parkinson's in their community. Each monthly nominee will receive a certificate of appreciation and a $150 cash prize to donate to a Parkinson's Disease organization of their choice. At the end of the year, we will select a single winner out of our 12 monthly nominees who best personifies the spirit of the award. The winner will receive a plaque and a $500 cash prize to put toward a PD charity of their choice. All of the monthly nominees will be featured on our various media outlets throughout the year.
If you wish to nominate someone for the PDDP, you can access our nomination form here. We are currently accepting only Virginia-based nominees.
From the Nominator:
I am nominating Susan Burns for the PDDP. Years ago, she identified that women with PD, who represent the minority since PD much more commonly affects men, often have special needs that are typically unmet by regular support groups. She wanted to create a support group that was different from the rest in many ways. While education was still a priority for her, she placed much more emphasis on meeting the emotional needs of group members as they reacted to their diagnosis and disease progression. I have attended hundreds of PD support group meetings across the state of Virginia as a guest speaker, but I have never encountered a group quite like this one. They are so warm and welcoming. They bake and bring cookies, and they foster true friendships within the group. It's wonderful to see!
-Leslie Cloud, MD, MSc
From the Nominee:
I am truly honored to be selected for this recognition. When I was first diagnosed with Parkinson’s Disease in 2012, my first reaction was “This cannot be happening to me!” To learn more about PD, my husband and I joined a PD support group, open to both men and women. At these meetings, I met several women who, like me, were experiencing PD symptoms they did not feel comfortable discussing in a large support group environment. With that in mind, and with the support of Dr. Sarah Lageman, Dr. Leslie Cloud, staff at the VCU Parkinson’s & Movement Disorder Center, and a group of like-minded women with PD, I started a PD support group exclusively for women. We chose the name “Women Going Forward” and our mission is to “Empower Women Living with Parkinson’s Disease.”
We advocate for:
Providing women with PD an environment where they can openly discuss all topics, share their experiences, and provide support to women newly diagnosed with PD
Providing women with the latest information on PD medications, treatments, and research
Mindful wellness as a key coping skill for women with PD
Exercise as a vital component to maintaining balance, mobility, and activities of daily living
My work with WGF has been a life changing experience. I believe I was given PD for a reason: to help other women with PD. My favorite quote is, “One positive thought in the morning can change your entire day’s outcome.”
From the Nominator:
I am nominating Bill Riley for his endless generosity and positivity. He has volunteered for multiple research studies at our center over the years, even though he lives a significant distance away and still works full time. He also started a support group for PD in his local community, a venue in which he shares his positivity and proactive approach to PD. -Leslie Cloud, MD, MSc
From the Nominee:
“Keep moving, keep active, keep learning, keep sharing” are the words that best describe my approach to Parkinson’s. Since first being diagnosed in 2012, I have been an active member of the Parkinson’s community with a keen focus upon gaining and sharing as much knowledge as possible about the disease. I was somewhat familiar with Parkinson’s from both my mother and her sister (my Aunt) having been Parkinson’s patients, but was both shocked and caught off guard the day my primary care doctor looked me in the eye and told me my diagnosis – since that day, I’ve really delved into reading and learning everything I can about this disease. Learning about and understanding Parkinson’s is one of our key roles as the patient – no one is more invested in this disease than the patient – and by learning all that I can, I believe that only serves to strengthen the quality of the care you receive from your movement disorder specialist and the other members of your care team. I also believe that sharing knowledge gained and information with other “Parki’s” is a key step in battling this disease. Recognizing a need in my local community for a Parkinson’s Support Group with a positive focus, I started and run a group on the Virginia Peninsula. I attended a few support groups and my impression was if you weren’t depressed when you got there, you sure as heck would be when you left. Several of us got together, and formed our own group called On Offense. We gather each month, research topics, share information, and exchange tips on what works. Our goal is to put as many tools as possible into each other toolkit for both fighting this disease and maximizing our daily quality of life. It’s been a great experience for not only those of us with Parkinson’s, but the spouses and care partners as well.
I have noted in almost all the topics we have looked into regarding Parkinson’s that one key term keeps coming to the forefront – Exercise. It seems that no matter what topic or symptom concerning Parkinson’s that you’re looking into, that exercise and its benefits come to the forefront. It is critical that we keep moving and keep active, work on flexibility, mobility, balance, muscular strength and cardio. When someone has Parkinson’s they tend to be stiff and fatigued quite often, the easy thing to do is give yourself a pass and not exercise, but then you have to ask. “how do I improve that situation?” Exercise is key to attempting to slow progression and helpful with so many of the other challenges of this disease. In addition to the work I do in his local community, I enjoy supporting research studies conducted at the VCU Parkinson’s and Movement Disorders Center. In my mind it ties to the same idea of the support group and being on offense against Parkinson’s. I like the idea of contributing as a study candidate to the knowledge pool that the gifted folks in the medical community are building to find new ways to improve our quality of life and eventually find a cure for this disease. It’s rewarding to be a participant and I always find I learn just a little bit more about Parkinson’s with each study I participate in.
Overall, I wouldn’t want to say that Parkinson’s hasn’t caused me to make a few minor concessions to how I handle each day, but I’m moving, I’m active, I’m learning, and I’m certainly enjoying life to the fullest each and every day.
From the Nominator:
Fred Woodlief, DDS was born and raised in Richmond, Virginia. After receiving a biology degree at The College of William and Mary, he completed his D.D.S. training at The Medical College of Virginia in 1976. Most of his 33-year career was spent practicing family and cosmetic dentistry in a large multi-specialty group practice until his retirement in 2009. He holds Fellowship and Mastership in the Academy of General Dentistry, a worldwide organization emphasizing continuing dental education. He was an adjunct clinical professor for 10 years at the MCV/VCU School of Dentistry. Dr. Woodlief was diagnosed with Parkinson’s Disease at age 56. Dr. Woodlief is a member of the Richmond Movers and Shakers. In 2016 he began what has become a yearly involvement with the PD SELF program (Self Efficacy Learning Forum out of Denver as the lead facilitator for this 9-month course for new PD patients).
Fred has eased so many folks in Central Virginia into their Parkinson’s journey through these programs and more. He helps the newly diagnosed through the initial shock, into the “I can do this” phase. The local community is a better place due to his continued efforts. Thank you, Fred, from the bottom of our hearts.
From the Nominee:
I was diagnosed with Parkinson’s Disease at age 56. I am a member of the Richmond Movers and Shakers, a local group of PD patients who have raised over 5 million dollars towards bringing a movement disorder program and nationally known neurologists to the Medical College of Virginia in Richmond. I serve on their fundraising and advisory committees and have done presentations on Parkinson’s topics at their monthly meetings. I have been serving as the facilitator of their support group since 2013. My desire is to facilitate the education of dental providers in the special needs of patients with Parkinson’s Disease.
I am in my fourth year of serving on the Parkinson’s Disease Foundation’s People With Parkinson’s Advisory Council (PPAC) with two years as its co-chair; and is a Clinical Research Advocate (PAIR) with the PFD after completing their Clinical Research Learning Institute in 2011. In 2012, I began serving as a patient advocate member of the PDF’s scientific grant review committee. I serve as an Assistant State Director for Virginia for the Parkinson’s Action Network (PAN). I also table for the PDF at local and regional events including the Davis Phinney Foundation’s Victory Summit in Richmond in May 2012 and the annual Richmond Parkinson’s Community Day.
In 2012, I joined the Society of Nuclear Medicine and Molecular Imaging’s (SNMMI) Patient Advocacy Advisory Board (PAAB) representing Parkinson’s Disease. I serve on the SNMMI’s Center for Molecular Imaging Innovation and Translation (CMIIT) Industry Partners Circle as a patient advocate. My interest is in the use of molecular imaging in the diagnosis of neurodegenerative diseases such as Parkinson’s Disease. I was a poster presenter while attending the 3rd World Parkinson’s Congress in 2013. The subject was “Helping Parkinson’s Patients Get A Clear View of Molecular Imaging”. I am active in fundraising for the VCU Parkinson’s and Movement Disorder Center and serve on the Center’s 5K Run/Walk committee and the planning committee for the Center’s Regional Advocates in Movement Disorders program. I enjoys speaking on the topics of Dentistry, Parkinson’s Disease, patient advocacy /clinical research. I have attended numerous continuing education courses and webinars on these topics.
In 2016, I began what has become a yearly involvement with the PD SELF program.
From the Nominator:
Bob Scudder was born and raised in Washington, DC and raised mostly in Ohio. After receiving a bachelor's degree in Chemistry at Xavier University, he completed a 4-year Doctor of Dental Surgery degree. He then joined the Navy and worked as a dentist and served in the Vietnam War on an aircraft carrier. He left the Navy after his first tour and had a private practice for four years. He missed the Navy so much that he went back to active duty and worked another 20+ years. He then worked in the management of hospital services and later ran a psychiatric hospital. He then taught medical administration at Medical University of South Carolina for 3-4 years. From about 1996-2000, he worked with the South Carolina Research Authority with development of computer systems for health care. In his last formal career, he became an executive coach and ran programs for about ten years. He retired in 2012. Dr. Scudder was diagnosed with Parkinson's disease in 2017. He has been a ardent participator in Rock Steady Boxing and attends classes 5-6 times per week. He just celebrated completing his 500th session! Dr. Scudder is also an enthusiastic supporter of POP and its events.
Bob is a tremendous advocate for Parkinson's disease awareness and the role of exercise in mitigating the impact of the disease. He approaches everyone to make them feel welcome and included in Parkinson's classes and events. Bob is a true social connector who strives to include others and share with people the resources available for Parkinson's disease. Thank you, Bob, for all of your enthusiasm and gracious connection to all members of the Parkinson's disease community.
-Dr. Sarah Lageman, PhD
From the Nominee:
I was diagnosed with Parkinson’s Disease in 2017. In the roughly four years since diagnosis, I have continued to live a full life. I have probably met more amazing people and made more close friends during this time than I could ever have imagined. I consider myself to be a healthy person. I take my medications and I go on with my life. A big part of my life is exercise but then I have always been active from a physical standpoint as well as from a social standpoint. As I am now 80 years old, I have put a good portion of my “work life” behind me and focus my life today on family, friends, some travel and, of course, exercise. I am most fortunate that, through the Power Over Parkinson's (“POP”) many programs, I have met a number of valuable friends and have used them as learning opportunities as well. POP has developed many programs focusing on Physical activity, exercise, social events, education, etc. I consider Gary Rogliano, Founder and Chairman of POP, and his daughter Margaret Preston, POP’s President, to be valued friends and business associates and I admire their contributions to benefit the Parkinson's community.
I receive my Parkinson’s health and medical care at Virginia Commonwealth University Health’s Pavilion in Short Pump, an amazing Center of Excellence where one of its major foci is their Movement Disorder Center including its extensive exercise and physical therapy programs. Shortly after being diagnosed with PD, I was introduced to an exercise program by the name of Rock Steady Boxing (RSB). This local affiliate was established in 2017 by Lindsay Nexsen, a hardworking and visionary Doctor of Physical Therapy. I have been a dedicated member of RSB and the gym since early 2018 and have reached a significant goal of being its first member to have completed 500 workout sessions. Lindsay and her cadre of experienced coaches have set the bar for many of us who strive to continually maintain and improve our health status. Additionally, we establish and grow new friendships and experience increased socialization capacity. I personally participate RSB’s programs as many as six days a week.
Refocusing on Power Over Parkinson’s, Gary Rogliano, our founder, has established within the POP organization, the POP Advisors Group. Per our mission statement, POP is dedicated to supporting those with Parkinson’s through financial, physical, and socialization avenues. When indicated, I provide background and other information through which newly diagnosed individuals can access same. It is a distinct pleasure to both participate in the program and provide information to newly diagnosed clients.
From the Nominator:
I am nominating Sue Knighten for the PDDP. I met Sue at a Support Group Meeting, “Women Going Forward,” she offered her assistance to the group and has been a positive asset to the group.
Sue was diagnosed with Parkinson’s Disease in the fall of 2014 and went for a second opinion in early 2015 and her diagnosis was confirmed. After her diagnosis, Sue moved to Richmond in 2016 from Louisiana. Since arriving in Richmond she has exceeded the meaning of volunteering and fighting her daily challenges living with PD.
She has been active with WGF since 2017 assisting in coordinating meetings and various events. She was selected to attend the Parkinson’s Policy Forum in Washington DC in spring 2018: 3-day program sponsored by Parkinson’s Foundation and MJ Fox Foundation for training and advocacy: bringing our message of needed support to Capitol Hill lawmakers
She Volunteered as an admin assistant in the Richmond PD Self Program for the 2018-2019 session. In December of 2018, she attended a workshop designated to train Support Group Leaders this event was sponsored by PMD Alliance and was held in Rockville, Md. She has also supported 2019+ admin assistant of the Richmond PD Self Program with training, substituting 2019, 2020. She has Initiated and supported the PD Self class of 2019-2000 and also served as chaplain of the Alumni group composed of all 2016-2019 PD Self participants.
Sue worked with Fred Woodlief to merge the Richmond PD SELF alumni group with the local Movers and Shakers support group to form the Richmond VA Parkinson’s Action Forum; supported group in admin functions. She also attended and supported various Parkinson’s community initiatives sponsored by different groups 2016-2021 and advocated for the importance of exercise in maintaining the health of PD patients
Sue has truly exceeded the requirements of a volunteer. I am honored to nominate her for the PDDP Award.
WGF volunteer Facilitator
From the Nominee:
I have been blessed to find myself in RVA with its rich environment of support for Parkinson’s disease patients. I feel especially lucky to have worked, played or exercised alongside the exceptional group of Parkinson’s patient advocates Power Over Parkinson’s has recognized here. And, lastly, I am honored to be included. I came from a community that tried to provide support for Parkies as some refer to us, but it never quite came together in a positive experience. Between the support groups, the skilled medical care and the lovely people who are fighting this monster disease, Richmond gets an A for advocating for us. I have added my bit in strongly encouraging all PD patients to participate in exercise programs, as a recognized avenue to positively affecting the physical and mental ramifications of PD. I particularly try to talk to those newly diagnosed because I strongly believe that it is much easier to get yourself into such programs before PD has knocked you down too many times.
I also have taken heed of Power Over Parkinson’s message that the exercise can be fun and use that as part of my spiel when talking with the newly diagnosed. I personally play PickleBall and take ballroom dancing lessons, both of which have definite effects on PD’s progression: strength, endurance, balance, etc., without actually going to exercise class at the gym. I have a couple of friends back in Louisiana who I credit with the slow progression of my PD because they encouraged me so successfully to keep moving when I felt bad even before I was officially diagnosed. It is much easier to continue an active life-style than to initiate it—momentum is priceless!!
Eugene "roy" Budd
From the Nominator:
I am nominating Eugene "Roy" Budd as our December PD Diplomat. He is cc'd here. Roy has generously volunteered countless hours of his time to participate in numerous clinical trials at our center over the years, driving back and forth from Williamsburg for every study visit. He is a wonderful example of how to live well with PD. He has the mindset and determination of athlete, which serves him well as he continues to live with PD.
He is also a dog trainer, and he occasionally arrived for study visits with roughly a dozen beagles in his truck. He and his wife JoAnn Gora are quite the force together. When they are on a mission together, get out of the way! I hope you have a chance to meet them one day.
Roy, please let us know what charity you have selected? Also, if you can send us a short paragraph about you, your experience with PD, and what your participation in trials and the PD community has meant to you, we will use that to draft the announcement that will go up on the 15th.
-Dr. Leslie Cloud
From the Nominee:
When I was first diagnosed with Parkinson’s, I was in a state of disbelief and denial. Then came the self-pity. That turned into anger and hostility towards everyone and everything!! Once I accepted that PD was my new “normal,” I started developing strategies to cope with this progressive disease. First, my wife and I formulated a plan of action to cope with some of the effects of the disease – – installing grab bars in bathrooms, rearranging furniture so it is located to help rather than obstruct movement. Eventually, I realized there were mental, not just physical, health challenges; I needed to guard against depression. So I focused on hobbies and activities that I enjoyed; I even started my own business, training dogs. My advice to fellow sufferers: move, move, and move some more!
The doctors and staff at the VCU Parkinson center have helped to guide me through my journey with PD. One of the best ways that I have found to be part of the treatment team is to participate in clinical trials conducted at VCU. These trials made me feel I was helping fight the disease. As a former athlete, I wanted to “get a glove and get in the game.” I wanted to be part of the solution, not just part of the problem. I wanted to help find new and effective meds that eased the journey for others. Another benefit to participating in the trials is realizing that the doctors you are working with are gaining a greater understanding of your experience with the disease. They get to know you and your challenges better. Ultimately, that helps them help you! It’s been my privilege to work with the doctors at the VCU center for the study of Parkinson’s.
January - 2022
From the Nominator:
I am nominating Thomas Lincoln for the PD Diplomat program because of his support of the local PD community and his commitment to participating in clinical research. In 2016, his family had the idea to establish a Rock Steady Boxing (“RSB”) gym to improve the quality of life of those diagnosed with Parkinson’s. Tom’s wife, Maryann, and daughter, Sarah, became certified RSB coaches in December 2016 and co-founded RSB Charlottesville in March 2017. Throughout, Tom has been a core supporter and participant in RSB. He recognizes the importance of exercise in helping his PD symptoms and attends RSB 2-3 times a week. Over the years and with two location moves, over 50 boxers and 6 volunteers have participated in classes at RSB Charlottesville. He always strives to make RSB available to other patients by advocating for the program. Tom also recognizes the importance of research in improving the lives of PD patients. Over the past years he has been a research participant in PD studies at both VCU and UVA.
-Dr. Matthew Barrett
From the Nominee:
I was born in 1949 and raised in Upper Montclair, New Jersey. I am an alumnus of St. Paul’s School (1967) in Concord NH and University of Virginia (1971) with a BA in Art History. At both schools he was a member of the rowing team. I married my wife, Maryann, in 1979. I became a certified Land Surveyor in 1981 and opened Lincoln Surveying in 1987 in Charlottesville, VA. My wife and I were blessed with two sons and two daughters. I was an avid golfer and would always play in summer golf leagues. Once, as a speaker, I told my audience that “my golf handicap is my job, my wife and my 4 children.”
After receiving a diagnosis of Parkinson’s Disease (PD) in 2011, I continued to remain active at work, at home, attended support groups, RSB classes and traveled the world with my wife. I continue to remain active in RSB because I believe it has made me stronger, helped me focus my attention, my balance, to socialize with my PD friends, and it has given me many opportunities to find out about PD treatments and research studies. As a result, I felt the importance to participate in the PD research studies that I was eligible for. I believe the research in PD today will help us better understand the disease, to design future treatments, and to greatly improve the quality of life not only for myself, but for my PD peers as well. My family and I are extremely grateful for the continued and dedicated professional care that I receive from Dr. Matthew Barrett and his clinical team at VCU.