Over the past 15 years, our greatest joy has been getting to know people living with Parkinson’s. They are our greatest teachers, sources of inspiration, and the people we reach out to when we want to hear the real deal. That’s why we’re handing over our next The Victory Summit® Virtual Event to them. Join these speakers and the Foundation on April 2 as we celebrate Parkinson’s Awareness Month and pass the mic to people who can show you that it is possible to live well with Parkinson’s today — because they are doing it themselves.
You can learn more about the event and find the full agenda online here, and read on for a close-up look at the event’s speakers.
Kat Hill: welcome and moderator of “Communication and Parkinson’s”
Kat, a Davis Phinney Foundation Ambassador, was diagnosed with Parkinson’s at the age of 48. Both Kat’s father and two uncles had Parkinson’s, but all were diagnosed later in life. Kat was shocked at the diagnosis yet determined to not be defined by it. Kat left her busy and demanding practice as a midwife to shift her efforts towards health and wellness. Kat believes that every day is a gift and that we can learn to live with joy and gratitude, even with challenges.
Learn more about Kat here.
Cidney Donahoo: “Communication and Parkinson’s”
Cidney was diagnosed with Parkinson’s in 2010 at the age of 47. She became involved in the Parkinson’s community through cycling after participating in a tandem bike exercise study with Dr. Jay Alberts. She went on to ride RAGBRAI in Iowa with the Pedaling for Parkinson’s team and Ride the Rockies in Colorado with the Davis Phinney Foundation team. Cidney continues to cycle, often riding tandem with her husband Pat, and has since added yoga, strength training, and boxing to her exercise regimen. Exercise helps her stay healthy and manage her Parkinson’s symptoms.
Cidney’s mission is to “leave no Parkinson person behind” by increasing the information and peer-to-peer support in her community. A retired educator, Cidney co-founded a local support group for people with Young Onset Parkinson’s in the Las Vegas area. “When I was first diagnosed with Parkinson’s, I knew I wanted to approach this challenge in a proactive and positive way. When I learned about the Davis Phinney Foundation, I knew I had found exactly what I was looking for as a guide to living my life,” she explains. “It’s very meaningful and natural for me to talk with others about the Davis Phinney Foundation as an Ambassador because I wholeheartedly believe the Foundation can help make a real difference for people.”
Learn more about Cidney here.
Pat Donahoo: “Communication and Parkinson’s”
Pat’s wife Cidney was diagnosed with Parkinson’s in 2010 after a four-year journey to a diagnosis. Cidney came across the Davis Phinney Foundation as she was researching Parkinson’s, and together she and Pat actively embraced the Foundation’s philosophy of living well today. Pat notes the benefits living well has brought to each of them, saying: “It’s kept us both off the couch and has built an active lifestyle we both follow.” Pat and Cidney work together with the Parkinson’s community in Las Vegas to spread the message that it is possible to live well today with Parkinson’s.
Allan Cole: “Exercise and Parkinson’s Panel”
Allan was diagnosed with young-onset Parkinson’s disease (YOPD) in 2016, at age 48. Since then, he has devoted significant time and energy to raising awareness, providing education, fundraising, and writing about his own experiences of living with Parkinson’s. Allan is a professor and the academic dean in the Steve Hicks School of Social Work at The University of Texas at Austin, and a Professor of Psychiatry in the Dell Medical School. An avid writer, he’s published 10 books and dozens of articles on a range of topics related to bereavement, anxiety, and spirituality. He’s also an avid runner who believes exercise is one of the most essential keys to living well with Parkinson’s.
Learn more about Allan here.
Judith Wilson: “Exercise and Parkinson’s Panel”
Dr. Judith Wilson is a retired family physician whose entire career was focused on community health. Retirement came much earlier than she had expected as the demands of electronic medical records became increasingly difficult to meet and Parkinson’s began to manifest itself in her professional life. When Dr. Wilson was diagnosed with Parkinson’s in July 2011, her movement disorder specialist prescribed exercise as her first “medication.” That moment changed her view of exercise forever. She filled the prescription by finding several favorites (spinning, boxing, yoga, weights). Spinning and contact with other spinners led to contact with the Cleveland Clinic which led to a tandem bicycle, more than 6,000 miles of training, and riding RAGBRAI with the Pedaling For Parkinson’s and the Foundation’s team five times. Dr. Wilson and her husband Ken use opportunities to speak at community gatherings to help spread the word about exercise and its extremely important role in slowing progression as well as living well with Parkinson’s.
Marty Acevdeo: “Nutrition and Parkinson’s”
Diagnosed with Parkinson’s in 2010, Marty says that she experienced symptoms of gait disturbance, dystonia, and REM sleep behavior disorder 10 years prior to her diagnosis. After her progression through the grieving process, Marty decided that her life would not be defined by her diagnosis. She felt called to help others who share this journey and quickly became involved with the Parkinson’s Association of San Diego. Serving as secretary on the board of directors, she targeted her knowledge and passion towards educating others living with Parkinson’s, encouraging exercise and socialization and helping others to find their best life. Marty is most proud of her involvement in the development and implementation of an integrated, medical-evidence-based program for people with Parkinson’s at a local wellness center.
Marty, a Davis Phinney Foundation Ambassador, is an avid traveler with her husband and their travel van, having covered 35 states and multiple national parks. Exercise, enjoying the ocean and beach, maintaining and cultivating new friendships, learning new things, and sharing her positive outlook are all vital to her daily life.
Learn more about Marty here.
Edie Anderson: Moderator of “Nutrition and Parkinson’s”
Edie, a Davis Phinney Foundation Ambassador, was diagnosed with Parkinson’s in 2013 at the age of 60. She developed Parkinson’s symptoms after undergoing several surgeries and chemotherapy in her earlier battle with breast cancer. After a year-long “pity party,” Edie found the help she needed through a local support group, where she met another person living with Parkinson’s who shared his passion for exercising. “I became a workout junkie,” she says. “I have benefited physically, mentally, and emotionally from my active lifestyle.”
Edie is passionate about helping fellow people with Parkinson’s discover the benefits of working up a sweat by engaging in a variety of exercise classes and activities — her favorites include strength training, boxing and spin classes. She teaches Parkinson’s programs at a variety of Parkinson’s support group meetings, as well as educational events in both Virginia and southwest Florida. Her goal is to encourage people with Parkinson’s to find their “happy and then make it happen!”
Learn more about Edie here.
Wayne A. Gilbert: “Nurturing Resilience through Poetry”
Wayne A. Gilbert is a retired teacher and professor of English and Educational Psychology. He has published two poetry chapbooks: Magmamystic and From the Ashes. He is a full-time poet and is in demand as a performer, sometimes jamming with jazz musicians. Wayne was diagnosed with Parkinson’s in 2005. He took refuge in poetry and has written hundreds of “parkie” poems, which he refers to as “metaphor medicine.” Wayne is co-founder of Reconnect with Your Body, a Dance for PD ® affiliated class and performance company, is a co-founder of Us-in-a-Box Theatre Workshop, and he was a founder and facilitator of Unlocked Poetry, a monthly workshop for prison poets for several years. In 2018, Wayne received the 2018 Colorado Governor’s Creative Leadership Award.
Learn more about Wayne here.
Lorraine Wilson: “Sketching for Joy” workshop
Lorraine, a Davis Phinney Foundation Ambassador, was diagnosed with Parkinson’s early in 2017. She can still recall every detail of exiting the neurologist’s office and walking to the elevator while sharing the news with her husband of 40 years. They moved into bright sunlight as they left the building, yet she recalls feeling dark inside, numb, guilty, and afraid. Her role as an educator and her insatiable desire to learn helped her move from shock and sadness to action. She assembled a multi-disciplinary team of colleagues at the university where she was teaching, and her personal and professional journeys joined forces as they began an exercise study that looked at resistance training with instability and cadence walking. Lorraine says the support from family, friends, and others with Parkinson’s is critical to living well each day. Maintaining a positive outlook may not be easy, she says, but it is a worthwhile effort that lends support to others, making life that much better.
Learn more about Lorraine here.
Carol Clupny: “How to Tell Your (Parkinson’s) Story” workshop
Feeling symptoms such as tremor in multiple parts of her body and anxiety, Carol scheduled an appointment with her family physician, who felt stress was causing these symptoms. The medication he prescribed did little to help, and she returned to see him after she couldn’t effectively paddle her kayak. Carol was later referred to and diagnosed with Parkinson’s by a movement disorder specialist in 2008.
Carol continues to kayak but has since picked up tai chi, long-distance walking, and her now-favorite activity: cycling. She and her husband purchased a tandem bicycle and participate in the annual RAGBRAI cycling event. Carol also walked over 1,000 miles in France and Spain on the famous pilgrimage trails to Santiago de Compostela to gather funds for the Oregon Health Sciences Parkinson’s Center for Excellence.
As an Ambassador, Carol is excited to share her living well philosophy and resources with those living in rural areas.
Learn more about Carol here.
Amy Montemarano: “Working with Parkinson’s: How to Keep Your Job, Find a New One, or Reinvent Your Career” workshop
Amy was diagnosed with Parkinson’s at the age of 48. Through the strong medical and support networks for people with Parkinson’s in the Philadelphia area, Amy learned how to rely on exercise, stress management, and other wellness tools to help her live well with her diagnosis. Amy believes that living well with Parkinson’s means not giving up your enjoyment of life and fully engaging with the world in a way that uses your own special purpose and energy to its highest potential. Finding purpose and meaning in her own life post-diagnosis led Amy to help people with Parkinson’s and their care partners navigate employment, as well as find volunteer work or creative projects to discover their own personal adventures. For Amy, choosing to become a Davis Phinney Foundation Ambassador helps her to spread the message that it is possible to live well with Parkinson’s to even more people.
Learn more about Amy here.
Davis Phinney: “Living Well with Parkinson’s”
Davis Phinney was fresh off a successful professional cycling career, where he won an Olympic bronze medal in 1984 and was part of the first American team to race in the Tour de France, when he was diagnosed with Parkinson’s. He founded the Davis Phinney Foundation in 2004 with the goal of helping people living with Parkinson’s to improve their quality of life through education, inspiration, resources, and effective self-care.
Davis’ perseverance, coupled with his infectious positive attitude and dedication, inspires the work of the Davis Phinney Foundation and has earned him the reputation as a tireless advocate and mentor for others living with Parkinson’s. In spring 2015, he was honored at the White House as a Champion of Change because of his work in the Parkinson’s community.
Learn more about Davis here.
Additional Parkinson’s Experts
Three additional Parkinson’s experts will also be participating in the event. You can also start your day with our “Choose Your Own Adventure: Movement Choice” session, featuring a Dance for PD® class with David Leventhal or a Rock Steady Boxing class with Brett Miller. Anson Rosenfeldt will be moderating the Exercise and Parkinson’s Panel.
David Leventhal is a founding teacher and Program Director for Dance for PD, a program of the Mark Morris Dance Group that has now been used as a model for classes in more than 300 communities in 25 countries. He leads classes for people with Parkinson’s around the world and trains other teachers in the Dance for PD approach. He received the 2016 World Parkinson Congress Award for Distinguished Contribution to the Parkinson’s Community and was a co-recipient of the 2013 Alan Bonander Humanitarian Award from the Parkinson’s Unity Walk. He graduated from Brown University with honors in English Literature.
Brett opened a Rock Steady Boxing-affiliated gym in 2016, in addition to providing physical therapy to people with Parkinson’s in their own homes. In 2018, Brett also opened a wellness center, 110 Fitness, to provide programs for the Parkinson’s community, which is now the largest in the world. As an Ambassador, Brett believes in making the most of each day and hopes to bring essential tools to those in his community and share his experience creating comprehensive wellness programs.
Anson Rosenfeldt: Moderator for Exercise and Parkinson’s Panel
Anson Rosenfeldt, DPT, PT, NCS, MBA, is a neurological specialist in the field of physical therapy. She uses her physical therapy background to lead several clinical trials examining the role of exercise and neurological disease. She has an interest in the use of technology to improve rehabilitation outcomes and improve remote monitoring capabilities. She’s also a new member of the Foundation’s Science Advisory Board.
Register for the event
The Victory Summit Virtual Event: How to Live Well with Parkinson’s (for People with Parkinson’s by People with Parkinson’s) goes beyond the screen. You will have the opportunity to ask questions and engage with fellow people with Parkinson’s all from the comfort of your own home using a computer, tablet, or phone. Plus, you’ll meet some of our Ambassadors who are available to support you at any time. Register to join us.