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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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, …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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, …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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 …

Read More

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

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 …

Read More

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 …

Read More

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 …

Read More

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

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

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

UCB pauses the development of bepranemab for progressive supranuclear palsy

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

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

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

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

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

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

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

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

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

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

AbbVie Ends Tau Antibody Study

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

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

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

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

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

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.

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

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!

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!

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

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