By Richard Gordon Zyne, DMin, President - CEO, Society For Progressive Supranuclear Palsy
Special to The Movement Disorder Society
In 1990 the Society for Progressive Supranuclear Palsy (CurePSP) was founded in Baltimore, Maryland. The mission back then was to raise funds for research and to provide information to physicians, patients and their families. The founders had all experienced the ravages of PSP either as caregivers or as patients.
Progressive supranuclear palsy (PSP) is a brain disease that is about 4 to 5 percent as common as Parkinson's disease. Although it is often misdiagnosed as Parkinson's, this is changing as more doctors are becoming familiar with PSP. Prior to the establishment of the Society, there was no significant information available about PSP.
Patients and caregivers had no knowledge of how to find others with whom to share experiences. In addition, there was no hope for a cure since there was minimal research being done. The disease still remains much of a mystery, but now the Society is able to provide funding for PSP research, promote early diagnosis, educate families, physicians and allied health professionals and improve the quality of life for PSP patients and their caregivers.
CurePSP serves thousands of people throughout the United States and Canada through its comprehensive programs. In addition to working with support groups, CurePSP conducts numerous regional family conferences during the year and publishes educational materials on all aspects of PSP. In addition, the CurePSP Magazine is published quarterly to provide the latest information on PSP research and services.
In 2006, CurePSP expanded its mission to include another closely related neurodegenerative disease which is very similar to progressive supranuclear palsy-corticobasal degeneration. PSP and CBD share many features such as poor balance, dysarthria, dysphagia, rigidity and frontal cognitive loss, so patients and caregivers may benefit from each other's experience with daily management of the diseases. In addition, both disorders are "pure tauopathies" although they differ slightly at the cellular and molecular levels. Still, they are so close that some scientists think that they are merely variants of the same disease.
VISION, MISSION AND STRATEGIC DIRECTIONS FOR 2008-2009
Vision-Cure and prevent progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD)
Mission-Increase awareness of progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD), fund research toward a cure and prevention, educate health professionals, and provide support, information and hope for persons and families with PSP and CBD.
Research - Strategic Directions
Identify the etiology and pathogenesis of progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).
Develop practical diagnostic tests that would be effective in the earliest stages of the diseases.
Develop treatments to palliate symptoms, as well as to prevent, slow, halt, or even reverse the progression of the diseases.
Outreach and Education - Strategic Directions
Communicate the mission and vision of CUREPSP in a compelling and consistent manner and to be the primary organization providing outreach, education, advocacy and hope to patients, their families, and the general public.
Provide scientific and clinical information to physicians and healthcare professionals regarding the specific nature of progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD), their diagnosis, symptoms, and treatment.
During the past 11 years, CurePSP has created a sophisticated infrastructure for attracting qualified scientists to PSP research. It established a centralized PSP brain bank-The Eloise H. Troxel Memorial Brain Bank at the Mayo Clinic, in Jacksonville, Florida-the largest in the world and a resource for PSP investigators worldwide. It assembled a Scientific Advisory Board comprised of renowned international scientists and PSP clinical experts. The CurePSP research grants program has attracted scientists not previously involved in PSP to study its causes and treatment. Research supported by CurePSP has substantially advanced our knowledge about PSP.
Since 1997, CurePSP has funded close to 100 grants totaling more than $4 million to qualified scientists in the following areas:
Tau Genetics: Biochemistry and the Tau Gene as a Treatment Target
Non-Tau Based Pathologies: Mitochondria, Radicals, Cell Death
Non-Tau Based Genetic Studies
Anatomic and Histopathologic Surveys
Toxins and Epidemiology
Clinical and Laboratory Treatment-Oriented Research
Clinical, Non-Treatment-Oriented Research
This research has resulted in a clear recognition of the unique genetic, biochemical, and molecular features associated with PSP. In 2007, CurePSP began the PSP/CBD Genetics Program-a multi-year venture-primarily funded through the Peebler PSP Research Foundation. The goal is to search the entire genome for genes related to PSP and CBD and to identify previously unsuspected abnormal biochemical pathways against which scientists may be able to target therapeutic interventions. All activities will be carried out by the CurePSP Genetics Consortium, composed of neurologists, geneticists, and other scientists from the United States, the United Kingdom and Germany working in collaboration with neuroscientists throughout the world.
In August 2008, CurePSP received a $1 million gift from Irene and Abe Pollin for translational research in corticobasal degeneration (CBD). This was the single largest gift ever received by the Society for any purpose.
About Richard Gordon Zyne, DMin
Dr. Richard Gordon Zyne has been the chief executive officer since December 2004 and has been in not-for-profit executive management for over 35 years. He has been the CEO of several organizations including: Rappahannock General Hospital Foundation, the Children's Museum of Richmond, Volunteers of America of Virginia (Richmond), and SPECTRAN (Specialized Transportation for the Elderly & Handicapped).
He has also been vice president for institutional advancement and planning at Mount Olive College in North Carolina and Director of Development at Virginia Union University. Dr. Zyne holds a Doctor of Ministry (DMin) and Master of Divinity from Virginia Union University and graduate degrees in science and planning from Pratt Institute In addition to his professional work, he is also a professional artist who has held numerous solo shows in the South.