Leading Researchers and Representatives of Alzheimer’s Association, CurePSP and Rainwater Foundation Publish Paper on Outcome of Tau2022

Categories: News

In February 2022, leading international tau experts convened to share selected highlights of the paper, “Novel avenues of tau research,” during Tau 2022, the second international tau conference co-organized and co-sponsored by the Alzheimer’s Association, CurePSP and the Rainwater Charitable Foundation. According to the paper, academia, industry and philanthropic sector presenters joined more than 1700 …

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CurePSP Funds Collaborative Projects Focused on Care of Neurodegenerative Diseases

Categories: News
NEW YORK, Jan. 9, 2024 /PRNewswire/ — CurePSP announced the recipients of their Collaborative Approaches to Resources, Education and Support (CARES) grants, marking the second year of the innovative funding program designed to improve best practices in the care of progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). CARES promotes multi-center …

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Amylyx is starting to recruit for a phase III clinical trial

Categories: News, Research News

For PSP Patients and Care Partners: Amylyx is starting to recruit for a phase III clinical trial to evaluate the clinical safety, tolerability, and efficacy of a potential treatment for adults with PSP. We encourage you to learn more about this effort. Below, you will find more information on the trial and a link to …

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Amylyx Pharmaceuticals Announces First Participant Dosed in the Global Phase 3 ORION Study of AMX0035 in Progressive Supranuclear Palsy (PSP)

Categories: News, Research News
– Largest ever PSP clinical trial will evaluate the efficacy and safety of AMX0035 in adults with PSP compared to placebo – Trial to enroll approximately 600 participants across the U.S., Canada, Europe, and Japan   CAMBRIDGE, Mass.–(BUSINESS WIRE)– Amylyx Pharmaceuticals, Inc. (NASDAQ: AMLX) (“Amylyx” or the “Company”) today announced that the first participant has …

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U.S. House of Representatives Passes the National Plan to End Parkinson’s Act!

Categories: News
CurePSP is thrilled that HR 2365, originally the National Plan to End Parkinson’s Act and now the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act, passed the House of Representatives on Thursday, December 14th, by a vote of 407 to 9!  This bipartisan no-cost legislation would create an advisory council …

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PSP Care Partner Quoted in New York Times Article on Caregiving

Categories: News
A PSP care partner talked about her experience in a recent New York Times article titled “The Quiet Rage of Caregivers.” Jennifer Levine, whose father had PSP, talked about the range of emotions felt by care partners which can be difficult to share.  “A lot of caregivers are afraid to express their anger, because they …

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CurePSP Presents Two Scientific Posters at 2023 International Movement Disorders Society Congress

Categories: News
By Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP More than 5,000 neurology professionals from 105 countries attended the Movement 2023 International Movement Disorder Society (MDS) meeting. Movement disorders specialist neurologists, allied health clinicians, non-profit organizations, industry partners and patient advocates gathered, in greater numbers than ever, for the annual gathering. This August, …

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CurePSP Awards Latest Pathway and Pipeline Grants and Urso Student Fellowship Grants Looking to Take Advantage of Recent Neuroscience Breakthroughs

Categories: News
Studies seek to establish an early-stage blood biomarker, explore novel therapies and support the creation of a cohort of PSP and CBD patients in Argentina. NEW YORK, Sept. 28, 2023 /PRNewswire/ — CurePSP has awarded its latest Pathway and Pipeline Grants and Urso Student Fellowships, totaling over $422,000. Recipients of the grants are: Dr. Kurt Farrell, assistant professor at …

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Now Hiring: Associate Director of Clinical Affairs and Advocacy

Categories: News
CurePSP seeks an Associate Director of Clinical Affairs and Advocacy to work as part of the Patient & Care Partner Advocacy Team, reporting to the Director of Clinical Affairs and Advocacy. This team primarily focuses on CurePSP’s care and consciousness pillars and oversees programs and strategies that include direct interaction and support of people affected …

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Parkinson’s Foundation and CurePSP Announce Partnership for Launch of Special Programming for Healthcare Professionals

Categories: News
NEW YORK & MIAMI (September 21, 2023) /PRNewswire/ — The Parkinson’s Foundation today announced the launch of a partnership with CurePSP on the development of a multi-part educational program geared towards healthcare professionals. The program focuses on “atypical Parkinsonian syndromes,” including: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). “As a leader in professional medical …

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Congresswoman Jennifer Wexton announces Progressive Supranuclear Palsy (PSP) diagnosis

Categories: News
Today, Congresswoman Wexton announced she has been diagnosed with Progressive Supranuclear Palsy (PSP). This comes after previously sharing that she had been diagnosed with Parkinson’s disease in April 2023. As stated on her House of Representatives website, Rep. Jennifer Wexton has been serving the people of Northern Virginia for nearly two decades, first as a …

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CurePSP to Sponsor and Exhibit at INPCS23 With an Eye Towards Strengthening Palliative Care Network

Categories: News
The International Neuropalliative Care Society (INPCS) will be hosting its third annual professional symposium September 12-15. The event, taking place in Minneapolis, Minnesota, will be attended by hundreds of neurology professionals and will feature speakers on creative approaches to neuropalliative care and updates on the state of the field, clinical rounds discussions, networking opportunities, scientific …

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For Kathy Cieslak, the CurePSP Quality of Life Respite Grant Provided a Caregiving Companion When She Needed One Most

Categories: News
Kathy Cieslak and her husband, Jim, suspected something was wrong after he suffered the first of several falls while working at UPS. When he was diagnosed with progressive supranuclear palsy (PSP) and frontotemporal dementia (FTD) in 2021, they didn’t know where to start, but Kathy did all she could to maintain a sense of normalcy …

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CurePSP Awards Latest Urso Student Fellowship Grants

Categories: News
CurePSP has awarded its latest round of Urso Student Fellowship grants to students and trainees conducting projects considered pertinent and valuable to future research for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and related diseases. Supported by the Paul and Ruth Urso Memorial Research Fund, these projects may be in basic, translational, clinical or epidemiological …

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Share the Care: Jessica Shurer, CurePSP Director of Clinical Affairs and Advocacy, on the Importance of Assisting Families

Categories: News
Dear valued member of the CurePSP community, As you know, building a support system is essential to living the best life possible with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) or multiple system atrophy (MSA). For many, this includes professional care services for additional assistance and companionship for the diagnosed person and a break, or …

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CurePSP Exhibits for the First Time at the American Academy of Neurology Conference

Categories: News
For neurologists, each spring is marked by the American Academy of Neurology (AAN) annual conference. Neurology professionals from across the United States and beyond gathered at AAN, a multi-day meeting from April 22 to 27 in Boston, MA, to learn about clinical and scientific developments in the field.  CurePSP hosted an exhibitor table at AAN as …

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The Unifying Power of Rare Disease: CurePSP Visits Capitol Hill

Categories: News
CurePSP’s Director of Clinical Affairs and Advocacy, Jessica Shurer, attended Rare Disease Week on Capitol Hill during the week of February 28 — March 2. She was joined by Julie Balasalle, CurePSP volunteer and social worker specializing in policy and lobbying. As Shurer shared, “this is just the beginning” for CurePSP’s involvement in larger scale …

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Share the Care: Joanna Teters, CurePSP Support Programs Manager, on the Powerful Impact of the Quality of Life Respite Grant

Categories: News
As you likely know, it is equally important to address the well-being of both the person diagnosed with a neurological diagnosis and their family care partner; building a support system is paramount to achieving that. Since 2016, over 150 families living with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) or multiple system atrophy (MSA) have …

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CurePSP Strengthens Team with Director of Development and Associate Director of Scientific Affairs and Partnerships

Categories: News
NEW YORK, Feb. 14, 2023 /PRNewswire/ — CurePSP, a leading not-for-profit organization dedicated to advancing patient support and treatments of rare neurodegenerative diseases, is pleased to announce the addition of Rich Spain as its director of development and Jennifer Brummet, PhD as its associate director of scientific affairs and partnerships. Spain, who has served as …

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Rich Spain Feels Right at Home as the Inaugural Director of Development

Categories: News
Rich Spain uses the adage, “you don’t know what you don’t know” to describe his father’s PSP diagnosis. Rich does know his parents well, and as an only child would call them every day while in college. When he learned of his father’s diagnosis in 2016, he moved back home to Richmond as soon as …

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CurePSP extends its partnership with the Rainwater Charitable Foundation to accelerate the development of neuroimaging human biomarkers for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and other primary tauopathies

Categories: News
NEW YORK, Jan. 31, 2023 /PRNewswire/ — CurePSP has awarded a $90,000 grant for the pre-clinical and clinical development of a high-affinity neuroimaging agent to visualize tau deposits specifically in the brains of patients living with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). This potential breakthrough study aims to aid diagnosis and help advance …

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CurePSP launches a new annual grant program to promote collaboration and advance clinical care research

Categories: News
NEW YORK, Jan. 20, 2023 /PRNewswire/ — CurePSP has announced the recipients of the first Collaborative Approaches to Resources, Education and Support (CARES) research grants. The goal of CARES is to improve the best practices in care for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). The launch of the CARES grants …

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CurePSP Expands Specialized Care Network for Rare Neurodegenerative Diseases

Categories: News
NEW YORK (November 17, 2022) /PRNewswire/ — CurePSP has announced the designation of Queen’s Parkinson’s and Movement Disorders Center in Hawaii and the Department of Neurology at the University of Michigan as CurePSP Centers of Care, bringing the total to 30 centers across the United States and Canada. The expansion of this network of specialized …

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CurePSP is hiring! Join us in our mission!

Categories: News, Uncategorized
Professional Opportunity Director / Associate Director of Scientific Affairs and Partnerships Download Job Description Here The Opportunity: CurePSP seeks a Director or Associate Director of Scientific Affairs and Partnerships. This role offers the opportunity to advance key strategic initiatives and partnerships as a senior member of a leading neuroscience nonprofit. This position reports to CurePSP’s Executive Director …

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Judy Coughlin, Wife of Former NFL Coach Tom Coughlin, Dies at 77

Categories: News
Judy Coughlin, the wife of ex-NFL head coach and executive Tom Coughlin, died Wednesday at the age of 77 after a lengthy battle with progressive supranuclear palsy (PSP), the family announced.  “My cherished wife and our beloved mother and grandmother, Judy Whitaker Coughlin, passed away this morning at the age of 77,” Coughlin said in …

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Lecanemab for Alzheimer’s: “Proof of Principle” for PSP, CBD and MSA

Categories: News
By Lawrence I. Golbe, MD, Chief Clinical Officer and Scientific Advisory Board Chair, CurePSP Great news for people with Alzheimer’s disease: A monoclonal antibody for intravenous infusion called “lecanemab” has been found to slow the rate of worsening of early-stage AD by 27%. The Japanese drug company Eisai, which developed the drug, and the US …

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Doing it for John: Bonelli Music Bash Returns for a Seventh Straight Year

Categories: News
  Lois Bonelli never has to worry if enough people will attend her event. As she prepares for the 7th Annual Bonelli Music Bash to honor her late husband John, Lois is excited to welcome back musicians and supporters who have been coming since the beginning. One of John’s brothers, Matt, is also a musician …

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CurePSP Joins the Unified Parkinson’s Advocacy Council

Categories: News
We are excited to announce that we have joined the Unified Parkinson’s Advocacy Council! Joining #UPAC comes at a significant time, given the introduction of the National Plan to End Parkinson’s Act to Congress. Learn more: https://t.co/09PPkr3Z0c#BecauseHopeMatters #HR8585 pic.twitter.com/kXq3nn3rLG — CurePSP (@CurePSP) September 22, 2022 CurePSP is excited to announce that we have joined the …

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The Ream Family Marches Past Their Goals

Categories: News
When Mary Kay Ream was diagnosed with progressive supranuclear palsy (PSP) in the fall of 2019 her family — husband Roger and daughters Alanna, Kelly, and Brooke — made it a priority to take Mary Kay on daily walks around her home in Oak Hill, Virginia. Mary Kay is now in a wheelchair but her …

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CurePSP Summer Newsletter Out Now

Categories: News
The latest CurePSP Connection newsletter gives an update from Dr. Kristophe Diaz on the allocation of your funds, a Q&A with Centers of Care Director Jessica Shurer, the latest on tau research from Dr. Rik van der Kant, reflections from Sanjay Geevarghese, a teenage carepartner, as well as a poem on gratitude from Diane Deaver, …

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For Carepartners, No Moment is More Important Than the Present

Categories: News
When Rafi Stern was a kid, the grass oval in the middle of the Stuyvesant Town apartment village was strictly off-limits. He and his mother, Suzanne Wasserman, a woman who elevated so much of New York City’s landscape, had always pondered what it would be like to touch that exclusive grass. That is until one …

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Dr. John Steele, Fondly Remembered

Categories: News
By Lawrence I. Golbe, MD Chief Clinical Officer, CurePSP The PSP community mourns the passing of neurologist John C. Steele, MD on May 21, 2022, surrounded by his children in Bali, Indonesia, his most recent home. He was 87. Dr. Steele was one of the physicians at the University of Toronto who in 1963 and …

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Andy Maus Assumes Board Chair Ready for Progress

Categories: News
Andy Maus knows that great systems aren’t built overnight. As the head of the Compass One Healthcare human resources department he oversees human resources for more than 2400 hospitals and integrated healthcare systems in 48 states. Maus says that optimizing the patient experience has guided the mission at Compass One, and as the newest Board …

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Diane Deaver Keeps it Moving Through her Quilts and Poetry

Categories: News
After being released from an emergency room in Alaska, Diane Deaver needed to pick up her Bell’s Palsy medication. She asked her son-in-law to make one stop before the pharmacy: the post office. She needed to mail her quilt, which she had worked tirelessly on while visiting her daughter and son-in-law in Alaska, back home …

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The AMULET study: A clinical research study for people living with MSA

Categories: News
To MSA patients and carepartners: at CurePSP, we work hard to follow developments by the pharmaceutical companies around the world that are advancing cures and treatments for rare neurodegenerative diseases. We’re reaching out today to let you know that Lundbeck is starting to recruit for a phase II clinical trial to evaluate the clinical safety, …

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CurePSP Centers of Care Lean on Each Other to Improve Care of PSP, CBD and MSA

Categories: News
When Dr. Miriam Sklerov first had the idea for a CurePSP Center of Care at the University of North Carolina Medical Center, she didn’t know where to start. Fortunately for Sklerov, an Assistant Professor of Neurology at UNC, she could take inspiration from the blueprint laid out by her colleague and the medical director of …

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CurePSP Elects Senior Healthcare Executive as Its Board Chair

Categories: News
Andy Maus will apply his personal and professional experience to advancing the foundation’s mission. NEW YORK, May 25, 2022  — CurePSP, the leading research and advocacy nonprofit organization for PSP, CBD, and MSA, has elected Andy Maus as the next chair of the nonprofit’s board of directors. Maus succeeds William R. (Bill) McFarland, who has …

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Ken’s Resilience: A Shared Ride for Hope and Support

Categories: News
When the snow finally melts in St. Alban’s, Vermont, it would take everything to stop Ken Appel from completing his 20-mile bike ride along the Missisquoi Valley Rail Trail. As he managed his PSP symptoms later in life, he had one question: “Am I going to be able to get on my bike?”  With the seasons …

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Checking in on Previously Funded Venture Grants: Where Are They Now?

Categories: News
CurePSP has always believed in the collaborative nature of research. By combining the work of scientists who have produced compelling research in targeted areas, we can build an integrated and comprehensive picture of PSP and CBD at pre-clinical and clinical levels. Past recipients of the Venture Grant are committed to understanding all aspects of these …

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Marty Rimestad Finds New Ways to Explore the Outdoors

Categories: News
If Marty and Wanda Rimestad could be anywhere, they would probably be perched in the breakfast nook of their old home in the countryside of Amery, Wisconsin, overlooking the serene view of the Balsam Branch river while Marty plans a fishing trip in the estuary. They may have moved closer to town following Marty’s progressive …

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Dr. Sally Temple Looks Ahead

Categories: News
Dr. Sally Temple doesn’t have time to feel pressure. For over three decades she has responded to uncertainty with the same remedy: more research. But now, for guidance and inspiration, Temple has taken her first flight since the start of the pandemic to meet with members of CurePSP’s Southwest Florida Support Group and to speak …

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Marco Island Takes its Biggest Step Towards a Cure Yet

Categories: News
Cindy MacDonald lets out a virtual gasp when I tell her that over 100 people had already registered for the 19th Annual CurePSP Awareness and Memorial Walk. She knows that the number of walk-ins has always been higher than those that pre-registered, and wants someone to pinch her when she thinks about how far the …

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CurePSP appoints former UNC Movement Disorders Center coordinator to its top programs position

Categories: Advocacy, Help News, 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 …

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CurePSP funds four new grants to advance treatment of prime of life neurodegeneration

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 …

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CurePSP appoints Dr. Kristophe Diaz as the foundation’s chief executive

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 …

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CurePSP’s clinical guide to rare neurodegenerative conditions is published by leading neurology journal

Categories: News, Research News
Frontiers in Neurology today published a consensus statement on the best practices in the clinical management of progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS; the most common symptomatic manifestation of the disease called corticobasal degeneration or CBD), created under the auspices of CurePSP and in collaboration with directors and team members from CurePSP Centers …

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FAQ on FDA Approval of Aducanumab

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 …

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VA plans expansion of benefits for disability claims for conditions related to certain toxic exposures

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 …

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