MENU DONATE CurePSP appoints former UNC Movement Disorders Center coordinator to its top programs position October 21, 2021 | By Sabrina Da Rocha Categories: Advocacy, News, Support News Jessica Shurer will head the foundation’s patient and family support and help expand its Centers of Care. NEW YORK, Oct. 21, 2021 /PRNewswire/ — Jessica Shurer, MSW, LCSW, has been appointed director – patient and carepartner advocacy by CurePSP, the foundation for prime of life neurodegeneration. She was previously the center coordinator at the Movement Disorders … READ MORE Protected: Train Keeps A Rolling: The Jeff Golub Film Debut October 20, 2021 | By Sabrina Da Rocha Categories: Uncategorized There is no excerpt because this is a protected post. CurePSP funds four new grants to advance treatment of prime of life neurodegeneration September 14, 2021 | By Sabrina Da Rocha Categories: News, Research News Studies at leading institutions may result in therapeutic approaches for PSP, CBD, FTD, and related diseases. NEW YORK, Sept. 10, 2021 /PRNewswire/ — CurePSP has awarded Venture Grants totaling $320,000 to scientists at Harvard Medical School, Columbia University, UT Southwestern Medical Center, and UCLA. The studies will investigate gene therapy, neuroprotective enzymes, activation of autophagy, … READ MORE CurePSP appoints Dr. Kristophe Diaz as the foundation’s chief executive August 9, 2021 | By Sabrina Da Rocha Categories: About us, News, Uncategorized A scientist with broad experience in life sciences will lead the organization’s research, programs, and fundraising initiatives. NEW YORK, NY (August 9, 2021) /PRNewswire/ – CurePSP, the foundation for prime of life neurodegeneration, has named Kristophe Diaz, PhD, as its new executive director and chief scientific officer. In this planned succession, he succeeds David Kemp as … READ MORE CurePSP’s clinical guide to rare neurodegenerative conditions is published by leading neurology journal July 6, 2021 | By Sabrina Da Rocha Categories: News, Research News Teams from the foundation’s Centers of Care compile the definitive guide to patient care Frontiers in Neurology today published a groundbreaking guide to best practices in the clinical management of progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) created under the auspices of CurePSP by the directors of its 25 Centers of Care and collaborators … READ MORE FAQ on FDA Approval of Aducanumab June 16, 2021 | By Sabrina Da Rocha Categories: News, Research News On June 7, 2021, the FDA approved aducanumab, a monoclonal antibody made by Biogen, for use in Alzheimer’s disease in the US. Here’s a quick list of frequently asked questions and their answers as provided by Lawrence I. Golbe, MD, CurePSP’s Director of Clinical Affairs What does the FDA’s approval of aducanumab for Alzheimer’s mean for PSP and CBD, considering both are … READ MORE VA plans expansion of benefits for disability claims for conditions related to certain toxic exposures June 3, 2021 | By Sabrina Da Rocha Categories: News, Support News New evaluation process to be applied in identifying future presumptive condition VA announced today two major decisions related to presumptive conditions associated with Agent Orange and particulate matter exposures during military service in Southwest Asia. Agent Orange VA will begin implementing provisions of the William M. Thornberry National Defense Authorization Act for Fiscal Year 2021(Public … READ MORE CurePSP awards three new Venture Grants for the study of PSP and CBD April 20, 2021 | By Sabrina Da Rocha Categories: News, Research News Studies will focus on toxic protein in the brain and genetic factors CurePSP has awarded Venture Grants to three researchers studying tau protein pathology and genetic factors in progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). Each grant is for $100,000. Dr. Rohan de Silva of UCL Queen Square Institute of Neurology in London has … READ MORE CurePSP and the Rainwater Charitable Foundation partner to support a collaborative biobanking platform for frontotemporal dementia research February 15, 2021 | By Sabrina Da Rocha Categories: News, Research News Partnership will support efforts to enhance quantity and quality of neuropathologic FTD research worldwide The Rainwater Charitable Foundation and CurePSP today announced their partnership to support an initiative to establish a federated network of brain banks that will be enabled to allow increased access to tissue for researchers as they work toward bringing effective treatments … READ MORE Protected: Volunteer Portal February 11, 2021 | By Sabrina Da Rocha Categories: Uncategorized There is no excerpt because this is a protected post. Protected: CurePSP Research Symposium January 13, 2021 | By Sabrina Da Rocha Categories: Uncategorized There is no excerpt because this is a protected post. UCB pauses the development of bepranemab for progressive supranuclear palsy December 18, 2020 | By Sabrina Da Rocha Categories: News, Research News A note from Kristophe Diaz, PhD, CurePSP Vice President- Scientific Affairs To our patients, caregivers, supporters, advocates, and volunteers: At CurePSP, one of our responsibilities is to stay closely connected to the leaders of the biotechnology and pharmaceutical sector. This allows us, with the help of our medical and scientific advisors, to keep up with … READ MORE Advisory on COVID-19 vaccines and PSP, CBD, and MSA from Lawrence I. Golbe, MD December 15, 2020 | By Sabrina Da Rocha Categories: News, Research News Print CurePSP COVID-19 Vaccines Advisory Advisory on COVID-19 Vaccines From Lawrence I. Golbe, MD, Director of Clinical Affairs, CurePSP I am clinical director at CurePSP, a nonprofit based in New York City, dedicated to support of those suffering from PSP, CBD and MSA and their families and caregivers. This memo indicates that PSP, CBD or … READ MORE CurePSP Partners With Rainwater to Support Pioneering Neurodegeneration Research August 11, 2020 | By Sabrina Da Rocha Categories: News, Research News Study will use ‘miniature brains’ cultivated from stem cells to study protein mutations Tweet this NEW YORK–(BUSINESS WIRE)–CurePSP has awarded a $100,000 grant for a potentially breakthrough study that will employ 3D organoid models that have been shown to produce structures similar to those seen in the human brain to understand the effects of protein … READ MORE Promotus Launched as Global Alliance of PSP and CBD NGO’s August 10, 2020 | By Sabrina Da Rocha Categories: News Will be key resource for patient advocacy, research, and clinical trials Tweet this NEW YORK — 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). … READ MORE CurePSP Cancels In-Person Events June 3, 2020 | By Sabrina Da Rocha Categories: News, Support News, Volunteer From Bill McFarland, Chair, Board of Directors On behalf of the CurePSP, Inc., Board of Directors, I’m writing to let you know that given the continued uncertainties created by the COVID-19 pandemic, and without a predictable avenue to safely bring together our caregivers, healthcare partners, and volunteers, we have been forced to cancel our in-person conferences, events, … READ MORE Scientific American Article Cites Tau Protein as Linchpin to Finding Neurodegeneration Cure April 14, 2020 | By Sabrina Da Rocha Categories: Research News In a recently published article, “Tau Shows Promise as Achilles’ Heel for Alzheimer’s and Similar Diseases,” the respected journal Scientific American reports that the recent emphasis on the understanding of the pathology of tau protein accumulation in the brain represents new hope of finding treatment and cure for many neurodegenerative diseases. Abnormal tau protein accumulation is … READ MORE Update Regarding COVID-19 Virus March 27, 2020 | By Denise Forero Categories: News We at CurePSP recognize that many of you coping with the struggles and challenges that PSP and other neurodegenerative diseases present may be facing even greater isolation, stress, and anxiety brought on by the COVID-19 virus. We have been working diligently since the onset of this crisis to make sure that we are able to … READ MORE CurePSP’s approach during the coronavirus outbreak March 10, 2020 | By Sabrina Da Rocha Categories: News To the CurePSP Community CurePSP’s approach during the coronavirus outbreak CurePSP’s primary concern during the coronavirus outbreak is the welfare of its employees, patients, families, caregivers, and supporters. Consequently, we have taken the following steps: CurePSP has been staying abreast of the impact of coronavirus (COVID-19) and we are following the latest guidance from the … READ MORE Advisory on Coronavirus From Lawrence I. Golbe, MD March 10, 2020 | By Denise Forero Categories: News Advisory on PSP and the Coronavirus From Lawrence I. Golbe, MD, Director of Clinical Affairs Those with PSP are at special risk with regard to the coronavirus and should take precautions sooner rather than later. COVID-19, the type of coronavirus causing the current pandemic, infects the entire respiratory system – just the nasal passages in … READ MORE Biogen Ends Trial of Its Drug for PSP December 13, 2019 | By Denise Forero Categories: News, Research News Our Letter to the PSP Community Regarding Biogen Trial Results By Lawrence I. Golbe, MD, Director of Scientific Affairs The pharmaceutical company Biogen announced today that the trial of its drug for PSP, gosuranemab, has failed to slow the progression of the disease. The trial included a 12-month period during which some patients received gosuranemab, … READ MORE CurePSP is hiring! October 2, 2019 | By Sabrina Da Rocha Categories: About us, News Professional Opportunity CurePSP is seeking a Vice President of Scientific Affairs and Director – Patient and Carepartner Advocacy to be an integral part of a motivated team. VICE PRESIDENT OF SCIENTIFIC AFFAIRS DIRECTOR – PATIENT AND CAREPARTNER ADVOCACY CurePSP is a nonprofit advocacy and research organization fighting “prime-of-life” neurodegenerative disorders with a strong focus … READ MORE CurePSP Image Library September 13, 2019 | By Denise Forero Categories: Uncategorized Every year we are continuously growing our number of volunteers who are helping spread awareness and hosting fundraisers to support our vital programs and services. CurePSP is incredibly thankful for all of the effort and hard work that our community demonstrates. We are always looking for new ways to display everything you all do for … READ MORE AbbVie Ends Tau Antibody Study July 29, 2019 | By Sabrina Da Rocha Categories: News, Research News AbbVie has ended the clinical trial of its intravenously administered antibody designed to slow the progression of PSP when it failed to show benefit. The double-blind study started in 2017 and has enrolled 378 patients in eight countries. The study was on track to end in early 2020, but an interim analysis showed no benefit … READ MORE CurePSP Awards Seven New Research Grants July 29, 2019 | By Sabrina Da Rocha Categories: News, Research News NEW YORK–(July 29, 2019)–CurePSP, the foundation for prime of life neurodegeneration, has awarded grants to scientific research into progressive supranuclear palsy (PSP) and related diseases totaling more than USD 200,000. The funding includes two Venture Grants totaling USD 190,000 and five student grants of USD 3,000 each. “Although PSP is rare, it is of great … READ MORE The Mystery of My Brother’s Brain – a personal story April 11, 2019 | By Denise Forero Categories: News, Support News This story comes to us from Solna Braude, who shares her brother’s journey in finding a definitive diagnosis for his neurological disease. Solna hopes to motivate patients and their families to donate their brains. Brain donations are an extremely valuable resource for science and for developing future therapeutic interventions for all neurodegenerative disorders. The Mystery … READ MORE CurePSP Names Dr. Lawrence I. Golbe, Eminent Clinician, as Head of Scientific Affairs March 28, 2019 | By Denise Forero Categories: News, Research News He succeeds Dr. Alex Klein, who moves to UCB post in Brussels NEW YORK (February 20, 2019) – CurePSP, the foundation for prime of life neurodegeneration, has named Lawrence I. Golbe, MD, one of the world’s leading clinical experts in progressive supranuclear palsy (PSP) and related neurodegenerative conditions, as its Director – Scientific Affairs. He … READ MORE Mama’s Legacy October 18, 2018 | By Sabrina Da Rocha Categories: News, Support News This story comes to us from Noha Al-Awadi about her mother and her battle with progressive supranuclear palsy. Tuesday, October 9th, 2018 marked a year of her passing. Mama’s Legacy By Noha Abdulrahim Al-Awadi “What do you mean, ‘progressive’”? That was the only question my mother asked her neurologist at Johns Hopkins Hospital in the summer of … READ MORE Rush University Medical Center Caregiver Study October 17, 2018 | By Sabrina Da Rocha Categories: News, Research News Have You Been a Caregiver for Someone with Parkinson’s Disease, PSP, MSA, CBD, or a related disorder? You have learned a lot by caring for your loved one with Parkinson’s Disease (PD), PSP, MSA, CBD, or a related disorder. Would you like to help other caregivers on their journey by sharing your experience? Rush University … READ MORE In Conversation with John Burhoe, Sr. October 11, 2018 | By Lucas Metherall Categories: Advocacy On Friday, October 5, CurePSP Board Director Amy Branch sat down with John Burhoe Sr., CurePSP Chair Emeritus, to discuss his thoughts on the progress made in the way we understand PSP. These videos capture that conversation. Part One Part Two Part Three More CurePSP News Here FREE Webinar, October 18 September 27, 2018 | By Lucas Metherall Categories: Support News Caregivers’ Search for Meaning For family and professional caregivers by Janet Edmunson, M.Ed. WHEN: Thursday, October 18, 2018 (The webinar also will be recorded for viewing later) – 7:00 p.m. (Eastern) – 6:00 p.m. (Central) – 5:00 p.m. (Mountain) – 4:00 p.m. (Pacific) HOW LONG: Webinar will be approximately 30-40 minutes in length. REGISTER: by … READ MORE Global Citizen Festival, Ultimate VIP Tickets! September 11, 2018 | By Lucas Metherall Categories: Support News Once again, CurePSP has secured four (4) Ultimate VIP tickets to the Global Citizen Festival, in Central Park, New York, September 29. At a retail value of $2,500, these tickets are now up for auction in support of CurePSP’s programs and services. Make a bid – who knows – you could win the best seats … READ MORE Sundaes to Stop PSP raised nearly $9,000 for CurePSP’s programs and services! September 10, 2018 | By Sabrina Da Rocha Categories: News Suburban Chicago Support Group’s First Fundraiser A Sweet Success By Kathleen Louden The Glenview, Ill., CurePSP Support Group held our inaugural fundraiser on Aug. 19, an ice cream social called Sundaes to Stop PSP, which increased awareness of progressive supranuclear palsy (PSP) and raised nearly $9,000 for CurePSP’s programs and services. Our 25-year-old group regularly … READ MORE CurePSP supports four new studies through its Venture Grants program July 25, 2018 | By Sabrina Da Rocha Categories: News, Research News Research will study genetic factors and tau-protein pathologies in progressive supranuclear palsy (PSP) NEW YORK–(BUSINESS WIRE)— CurePSP, the foundation for prime of life neurodegeneration, has funded four grants at a total of more than $300,000 to investigators at universities in the U.S. and Germany for innovative studies in progressive supranuclear palsy (PSP). PSP is an … READ MORE Complexities With PSP July 23, 2018 | By Lucas Metherall Categories: Support News This article by Niti Vaidya, our newest Peer Supporter in Mumbai, India, covers the small changes that occur with PSP that are often overlooked. Major complications that come with PSP, such as aspiration, UTIs, and the swallowing troubles that lead to aspiration, are always discussed with our doctors. However, because we, along with our doctors, … READ MORE Types of Care and Care Facilities July 20, 2018 | By Lucas Metherall Categories: Support News This article was written by CurePSP contributor and volunteer, Diane B. Breslow, MSW, LCSW. What follows is an overview of the spectrum of care and care facilities for adults with physical impairments or chronic disease. All of the levels discussed are potentially appropriate for people with PSP and related diseases. That said, it is extremely … READ MORE Matching Grant Challenge! July 19, 2018 | By Lucas Metherall Categories: Support News Dear Community, The Light of Day Foundation is teaming up with you once again, through the Hope Tour, to fight progressive supranuclear palsy (PSP) and related prime of life brain diseases by matching your gifts! Every dollar you give today up to $50,000 will be generously matched, so that your donation is doubled! $50 becomes … READ MORE Newburger July 9, 2018 | By Sabrina Da Rocha Categories: Uncategorized New Clinical Trial June 12, 2018 | By Lucas Metherall Categories: Research News NEW CLINICAL RESEARCH TRIAL FOR PROGRESSIVE SUPRANUCLEAR PALSY (PSP) IS NOW RECRUITING Progressive Supranuclear Palsy (PSP) is a neurodegenerative disease. In brain cells affected by PSP, there is an abnormal accumulation of a protein called tau. Tau protein forms “tangles” in the brain cells. It can spread outside the affected brain cell in the … READ MORE Remember Me Dancing June 12, 2018 | By Lucas Metherall Categories: Advocacy This article was published in the Tallahassee Democrat, May 19, 2018 I talked to my mother on Mother’s Day. Only it’s not really talking anymore; often all she can muster is a wail of lament. I know why she is wailing. It’s this horrible disease, progressive supranuclear palsy. It is killing her, breaking down the … READ MORE CurePSP Receives Two-Year Grant from the Stavros Niarchos Foundation to Support Families with Caregiving Burdens June 6, 2018 | By Lucas Metherall Categories: Support News Grants are administered by CurePSP through its Cherie Levien Quality of Life Fund, supported by the Levien family, the Stavros Niarchos Foundation, and other donors. CurePSP has received a two-year grant from the Stavros Niarchos Foundation (SNF) to support the Cherie Levien Quality of Life Fund, established in 2017 in memory of Mrs. Levien by … READ MORE Question and Answer with Ileen McFarland May 3, 2018 | By Lucas Metherall Categories: Advocacy, Support News, Volunteer Ileen McFarland, CurePSP Board Member and Dallas support group facilitator, talks to us about her upcoming event, Hope Squared, and about the motivation behind being one of CurePSP’s most active advocates. What is your history with PSP and caregiving? My late husband was diagnosed with Parkinson’s in September of 2006, and PSP in 2007. After … READ MORE Time To Go April 23, 2018 | By Lucas Metherall Categories: Advocacy, Support News This story comes to us from Rio Contrada, a young filmmaker and producer whose father, Fred Contrada, has progressive supranuclear palsy (PSP). Rio is making a short film based on his father; the crowdfunding link to support his project is below. I was 25 years old when the accident happened. My girlfriend and I … READ MORE CurePSP Receives Generous $4,700 Grant From Community Foundation of Middlesex County April 16, 2018 | By Lucas Metherall Categories: Help News March 31, 2018 – New York, New York. CurePSP has received a generous grant of $4,700 from the Community Foundation of Middlesex County (CFMC)/Ryan’s Circle of Giving Fund (RCG) in order to fund research programs into treatments and cure for prime of life neurodegeneration. The grant was made in memory of Jane Weiner-Schatz. CFMC is … READ MORE CurePSP Teams Up With the Tau Consortium April 11, 2018 | By Lucas Metherall Categories: Research News CurePSP and the Rainwater Charitable Foundation Launch the Prime of Life Brain Initiative The initiative will support neurodegeneration research with goal of finding treatment and cure NEW YORK, April 10, 2018 – CurePSP and the Rainwater Charitable Foundation (RCF) today announced their landmark partnership in the Prime of Life Brain Initiative, an unprecedented … READ MORE Words From a Caregiver in India April 5, 2018 | By Lucas Metherall Categories: Support News In this beautifully written article on caregiver care, Niti Vaidya from India shows us that caregiving for a PSP sufferer is the same the world over. it takes forgiveness, humility, patience, and kindness, and it’s OK if you run out of these things from time to time. Caregiver Breathers, by Niti Vaidya Being a caregiver … READ MORE Right to Try March 15, 2018 | By Lucas Metherall Categories: Advocacy, News Washington, D.C., March 14, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement in regards to last night’s vote in the House of Representatives on the latest version of the Right to Try Act: “Yesterday evening, the House of … READ MORE An Opportunity to Share Your Experience March 6, 2018 | By Lucas Metherall Categories: Research News We have been informed of a research project by a company wishing to learn, in detail, the patient and carepartner journey. This information will inform potential drug developers’ clinical trial operations and processes, to make clinical trial attendance as suitable as possible to the patient and carepartner. The interview, among other things, will cover a … READ MORE Navigating Veterans’ Affairs for PSP Sufferers February 28, 2018 | By Lucas Metherall Categories: Advocacy, Support News One Family’s Struggle Inspires Them to Help Others This article appears in our Spring 2018 Newsletter. From 1967 to 1971, Thyra Burakowski’s husband, Anthony (Tony), worked for the United States Navy, and was in Vietnam from 1968 to 1969. “I cannot tell you much about Vietnam because Tony did not speak about it at all,” … READ MORE NORD to Collaborate with FDA on Pilot Patient Engagement Activity February 28, 2018 | By Lucas Metherall Categories: Advocacy Posted by Christina Jensen, National Organization for Rare Disorders website, February 28, 2018 Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced a collaboration with the Food and Drug Administration (FDA) on a pilot project that would … READ MORE 1 2 3 Last OVERVIEW ANNUAL REPORTS AND POLICIES SCIENCE AND MEDICAL BOARDS OUR PARTNER SPONSORS BOARD OF DIRECTORS STAFF CALENDAR NEWS CYBERSECURITY CUREPSP WEBSITE DISCLAIMER News Categories About us Advocacy Help News News Research News Support News Uncategorized Volunteer 1216 Broadway 2nd Floor New York, NY 10001 Toll-Free: 800-457-4777 Phone: 347-294-2873 (CURE) Fax: 410-785-7009 Email: info@curepsp.org ©2021 CurePSP, Inc., unless attribution otherwise noted. 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