The Unifying Power of Rare Disease: CurePSP Visits Capitol Hill

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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!

| By Sabrina Da Rocha
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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?

| By Oscar Sullivan
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

| By Oscar Sullivan
Categories: News
| Tags: ,
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

| By Oscar Sullivan
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

| By Oscar Sullivan
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

| By Sabrina Da Rocha
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

| 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 …

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

| 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 …

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

| 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 …

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FAQ on FDA Approval of Aducanumab

| 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 …

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

| 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 …

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CurePSP awards three new Venture Grants for the study of PSP and CBD

| 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 …

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CurePSP and the Rainwater Charitable Foundation partner to support a collaborative biobanking platform for frontotemporal dementia research

| 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 …

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UCB pauses the development of bepranemab for progressive supranuclear palsy

| 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 …

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Advisory on COVID-19 vaccines and PSP, CBD, and MSA from Lawrence I. Golbe, MD

| 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 …

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CurePSP Partners With Rainwater to Support Pioneering Neurodegeneration Research

| 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 …

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Promotus Launched as Global Alliance of PSP and CBD NGO’s

| 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). …

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CurePSP Cancels In-Person Events

| 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, …

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Scientific American Article Cites Tau Protein as Linchpin to Finding Neurodegeneration Cure

| 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 …

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Update Regarding COVID-19 Virus

| 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 …

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CurePSP’s approach during the coronavirus outbreak

| 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 …

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Advisory on Coronavirus From Lawrence I. Golbe, MD

| 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 …

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Biogen Ends Trial of Its Drug for PSP

| 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, …

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AbbVie Ends Tau Antibody Study

| 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 …

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CurePSP Awards Seven New Research Grants

| 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 …

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The Mystery of My Brother’s Brain – a personal story

| 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 …

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CurePSP Names Dr. Lawrence I. Golbe, Eminent Clinician, as Head of Scientific Affairs

| 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 …

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Mama’s Legacy

| 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 …

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