Pacing for Parkinson's is often asked what happens with the money we raise each year. We are always happy to answer more specific questions, but this page is intended to be a clear expression of the ways the money our community raises and donates helps Parkinson's patients, their families, and the work of the Johns Hopkins Parkinson's Disesase and Movement Disorder Center.
100% of funds raised go to support the research, education/outreach, and clinical efforts of Johns Hopkins Medicine, with 80% of all funds directed to these initiatives within the Parkinson’s Disease and Movement Disorders Center at Johns Hopkins. The other 20% is earmarked to support broader patient care, education and discovery initiatives, like basic science research that is central to the advancement of knowledge in all disciplines of medicine, the training of the next generation of care providers and researchers, and ensuring facilities are comfortable for patients and their families.
Year-to-year, there’s no exact formula for how P4P funds are allotted to each category – it all depends on the requests made of the PDMD Center from community partners as well as the promising research and patient care projects that dynamically emerge. The decisions are made by the PDMD Center care team as a group, and are focused on projects that are sustainable and have the potential to improve the lives of those with PD, as well as that of their caregivers. For 2022, we're happy to share the following PDMD Center grant awardee highlights, supported by funds from Pacing for Parkinson's:
- Rock Steady Boxing at Forest Hill Fitness: This Rock Steady Boxing program in Forest Hill, MD offers free classes 6 days weekly to individuals with Parkinson's disease. This circuit/interval training program involves a series of exercies appropriate for all stages of PD that can improve power, strength, flexibility, and speed.
- Dance for PD: Dance for PD is an internationally known program developed by the Mark Morris Dance Company in Brooklyn, NY. Initially created to provide a non-medical outlet for people who are swamped with therapies and visits to doctors , the program was developed and choreographed specifically for people with PD and their loved ones with the idea of just teaching something new and unfamiliar to the participants. Over years, a great deal of research has suggested that Dance for PD stimulates improvement in both motor and non-motor symptoms. Borrowing from ballet, modern, jazz, tap, and other forms of dance, the movement is designed to stimulate expansiveness, expressiveness, and creativity. Learning new terms and new movement sequences supports cognition. Moving together in rhythm joins people.
- Aquatics for Parkinson's: People with Parkinson’s disease who exercise regularly move and maintain balance better than those who do not. Water boasts unique properties that enable it to be used for both therapy and fitness, especially for persons who cannot comfortably move on land, as is often the case for people with Parkinson’s. The assistance of buoyancy allows for bigger movements. Clients can practice walking with a more normal or exaggerated gait and carry out progressively larger ranges of motion. At the same time, forces of resistance and turbulence challenge balance and coordination. In addition, the soothing, warm temperature relaxes muscles and helps lessen rigidity and pain.
- Adapted Tai Chi for People with Ataxia: The Tai Chi Fundamentals Adapted Program (TCFA) designed by Tricia Yu in collaboration with PTs and OTs is both unique and ideal to provide the benefits of tai chi to people of all ability levels with seated, walker and side-support versions. The program can be used throughout the spectrum of disability making training and practice possible throughout the course of disease progression or recovery
- Yoga for PD: Yoga has been shown to increase quality of life, reduce balance dysfunction, improve stress, and build community in Parkinson's disease. Techniques in mindfulness, relaxation, and stress reduction are also utilized for improvement in both motor and non-motor symptoms of the disease.
Additionally, on the research front, studies and research projects continue. Dr. Alexander Pantelyat is leading a 5-year study of patients with Progressive Supranuclear Palsy (PSP), Parkinson Disease, and healthy older controls. It is dedicated to discovering and validating a spinal fluid protein biomarker that can help diagnose PSP accurately. If additional funding can be obtained, Dr. Pantelyat would like to assess the impact of the coronavirus pandemic on participants in this study by administering a monthly questionnaire about physical activity, mood, challenges, etc. and remotely monitoring physical activity (walking, exercise, sleep) using a novel set of wearable devices.
If you have questions or would like more information about any of the above programs, please don't hesitate to contact us at pacing4parkinsons@gmail.com.
