Where's the money go?

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. In the last year, Pacing for Parkinson's funds have supported projects at Johns Hopkins and beyond, including: 

  • a Rock Steady Boxing program in Harford County;
  • the ParkinSonics, a weekly Parkinson's choral group (read our recent feature on this group here);
  • a Parkinson's Exercise Program in Lutherville-Timonium;
  • monthly support groups, an annual patient-provider symposium, and regional programs to educate others in the movement disorders community;
  • Guitar-PD, a controlled, delay-start clinical trial of twice-weekly guitar lessons to evaluate the impact of instruction on hand dexterity, mood, cognition, and quality of life; and
  • the creation of a database of videos, biological samples, etc… from people with cervical, focal, and generalized (idiopathic) dystonia, and inquiry into dystonias of the eye.

For 2020, we're happy to share the following PDMD Center grant awardee highlights, supported by funds from Pacing for Parkinson's:

  • Dance for PD: This free, twice weekly dance program was developed in conjunction with the Mark Morris Dance Group of New York City. Led by a certified teaching instructor, this program focuses on seated stretching, rhythmic and imaginative combinations of movements. Dance has been shown to improve balance, gait, endurance, and quality of life in Parkinson's disease and other movement disorders.
  • Rock Steady Boxing - 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.
  • 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.
  • MAPS - Virtual Programming: MAPS has modified their free exercise and support groups to exist virtually in order to continue providing support for the PD community during the Covid-19 pademic. There are four exercise programs and a caregiver support group which occur weekly.

Additionally, on the research front, studies and research efforts 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.