Updated: Apr 27, 2020
Will be key resource for patient advocacy, research, and clinical trials
Promotus (www.promotus.org) has been launched as a global alliance of non-governmental organizations (NGO’s) focused on providing advocacy, support, and information for patients, families, and caregivers suffering from the rare neurological diseases Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).
The announcement was made by Andrew Symons, Chief Executive of PSPA of the U.K. and David Kemp, President of CurePSP of the U.S. PSPA and CurePSP played a lead role in formation of Promotus, which is primarily composed of all-volunteer organizations.
Currently Promotus includes organizations from Argentina, Australia, Canada, France, Germany, India, Ireland, Japan, New Zealand, and Sweden in addition to the U.K. and U.S. nonprofits. Promotus is actively seeking to encourage and cultivate the growth of groups in other countries.
Goals of Promotus members include providing support and counseling for families of patients, distribution of educational content, and creation of greater public awareness of the diseases. Larger, professionally staffed organizations like PSPA and CurePSP also support research through grants.
Speaking for Promotus, Mr. Symons said, “PSP and CBD know no boundaries and the need globally for education, awareness, and advocacy is great. We are excited to launch this new collaboration, which will allow NGO’s across the globe to share resources and expertise.” Mr. Kemp added, “Promotus fills a real need for patients, families, and caregivers and for pharmaceutical companies and academic researchers who are conducting clinical trials and other research into new drugs to treat these diseases. It has been a real privilege and pleasure to work with PSPA on this venture and we appreciate the lead role they played.”
PSP and CBD are related neurodegenerative conditions characterized by severe movement, behavioral, and cognitive impairment. There is currently no effective treatment and no cure for the diseases. They are currently thought to affect 5 to 6 per 100,000 people with relatively even incidence worldwide. While rare, PSP and CBD are pathologically related to common conditions like Alzheimer’s and Parkinson’s diseases and are therefore focuses of basic research and clinical trials aimed at finding drugs and other therapies to treat a broad range of neurodegenerative conditions.
PSPA is a national, neurological charity currently based in Milton Keynes, United Kingdom. Since 1994 we have been providing information and support to people living with PSP and CBD. We also raise awareness of the conditions among health and social care professionals (HSCP’s), and fund research into diagnosis, treatments and ultimately, hopefully, a cure. We rely entirely on voluntary donations to fund our programs. We have 2,000 people registered with us as living with PSP and CBD, and approximately 12,000 others registered as HSCP’s, carers, supporters, volunteers, or fundraisers. We run a Helpline service, which is a mix of employed staff at our HQ, and volunteer supporters in the evening.
PSPA is the only charity supporting people with these conditions in the U.K. For more information please visit www.pspassociation.org.uk
CurePSP is the foundation for prime of life neurodegeneration, a spectrum of fatal brain disorders that often strike during a person's most productive and rewarding years. Currently, there is no effective treatment or cure for these diseases, which afflict an estimated 150,000 people in the U.S. Since its founding in 1990, CurePSP has funded more than 190 research studies and is the leading source of support and advocacy for patients, their families, and other caregivers. CurePSP’s 22 Centers of Care are chosen for their superior facilities and personnel who are qualified to serve the needs of PSP and other movement-disorders patients. CurePSP also provides education and awareness to doctors and allied healthcare professionals and the general public. CurePSP is based in New York City. Please visit www.curepsp.org for more information.