Latest News from The Foundation
March 20, 2024
The 21st Southwest Florida PSP Support Group Awareness and Memorial Walk Blends Tradition With Fresh Faces for Renewed Optimism
It was a breezy and pleasant Saturday morning at Mackle Park when the Southwest Florida PSP Support Group and volunteers welcomed attendees for the 21...
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February 29, 2024
CurePSP Elects Longtime Board and Community Member as Its Board Chair
NEW YORK, Feb. 29, 2024 /PRNewswire/ — CurePSP, the leading research and advocacy nonprofit organization for PSP, CBD and MSA, has elected F. Jac...
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January 22, 2024
Leading Researchers and Representatives of Alzheimer’s Association, CurePSP and Rainwater Foundation Publish Paper on Outcome of Tau2022
In February 2022, leading international tau experts convened to share selected highlights of the paper, “Novel avenues of tau research,” during Tau 20...
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January 09, 2024
CurePSP Funds Collaborative Projects Focused on Care of Neurodegenerative Diseases
NEW YORK, Jan. 9, 2024 /PRNewswire/ — CurePSP announced the recipients of their Collaborative Approaches to Resources, Education and Support (CARES) g...
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January 08, 2024
Amylyx is starting to recruit for a phase III clinical trial
For PSP Patients and Care Partners: Amylyx is starting to recruit for a phase III clinical trial to evaluate the clinical safety, tolerabili...
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December 22, 2023
Amylyx Pharmaceuticals Announces First Participant Dosed in the Global Phase 3 ORION Study of AMX0035 in Progressive Supranuclear Palsy (PSP)
– Largest ever PSP clinical trial will evaluate the efficacy and safety of AMX0035 in adults with PSP compared to placebo– Trial to enroll a...
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December 15, 2023
U.S. House of Representatives Passes the National Plan to End Parkinson’s Act!
CurePSP is thrilled that HR 2365, originally the National Plan to End Parkinson’s Act and now the Dr. Emmanuel Bilirakis and Honorable Jenni...
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November 17, 2023
PSP Care Partner Quoted in New York Times Article on Caregiving
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...
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October 12, 2023
CurePSP Presents Two Scientific Posters at 2023 International Movement Disorders Society Congress
By Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSPMore than 5,000 neurology professionals from 105 countries&...
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October 05, 2023
CurePSP Recognizes Three Prominent Medical Institutions for Their Care for PSP, CBD and MSA
NEW YORK (October 5, 2023) /PRNewswire/ — CurePSP has announced the designation of three new CurePSP Centers of Care, bringing the total to...
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September 28, 2023
CurePSP Awards Latest Pathway and Pipeline Grants and Urso Student Fellowship Grants Looking to Take Advantage of Recent Neuroscience Breakthroughs
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...
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September 26, 2023
Now Hiring: Associate Director of Clinical Affairs and Advocacy
CurePSP seeks an Associate Director of Clinical Affairs and Advocacy to work as part of the Patient & Care Partner Advocacy Team, reporting to the...
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September 21, 2023
Parkinson’s Foundation and CurePSP Announce Partnership for Launch of Special Programming for Healthcare Professionals
NEW YORK & MIAMI (September 21, 2023) /PRNewswire/ — The Parkinson’s Foundation today announced the launch of a partnership with&nb...
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September 18, 2023
Congresswoman Jennifer Wexton announces Progressive Supranuclear Palsy (PSP) diagnosis
Today, Congresswoman Wexton announced she has been diagnosed with Progressive Supranuclear Palsy (PSP). This comes after previously sharing...
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September 06, 2023
CurePSP to Sponsor and Exhibit at INPCS23 With an Eye Towards Strengthening Palliative Care Network
The International Neuropalliative Care Society (INPCS) will be hosting its third annual professional symposium September 12-15. Th...
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August 17, 2023
For Kathy Cieslak, the CurePSP Quality of Life Respite Grant Provided a Caregiving Companion When She Needed One Most
Kathy Cieslak and her husband, Jim, suspected something was wrong after he suffered the first of several falls while&nbs...
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August 14, 2023
CurePSP Awards Latest Urso Student Fellowship Grants
CurePSP has awarded its latest round of Urso Student Fellowship grants to students and trainees conducting projects considered pertinent and valuable...
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August 11, 2023
Share the Care: Jessica Shurer, CurePSP Director of Clinical Affairs and Advocacy, on the Importance of Assisting Families
Dear valued member of the CurePSP community,As you know, building a support system is essential to living the best life possible with progressive supr...
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May 30, 2023
CurePSP Exhibits for the First Time at the American Academy of Neurology Conference
For neurologists, each spring is marked by the American Academy of Neurology (AAN) annual conference. Neurology professionals from across the Uni...
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March 14, 2023
The Unifying Power of Rare Disease: CurePSP Visits Capitol Hill
CurePSP’s Director of Clinical Affairs and Advocacy, Jessica Shurer, attended Rare Disease Week on Capitol Hill during the week of February 28 — March...
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February 21, 2023
Share the Care: Joanna Teters, CurePSP Support Programs Manager, on the Powerful Impact of the Quality of Life Respite Grant
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...
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February 14, 2023
CurePSP Strengthens Team with Director of Development and Associate Director of Scientific Affairs and Partnerships
NEW YORK, Feb. 14, 2023 /PRNewswire/ — CurePSP, a leading not-for-profit organization dedicated to advancing patient support and treatments of rare ne...
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February 02, 2023
Rich Spain Feels Right at Home as the Inaugural Director of Development
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 onl...
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January 31, 2023
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
NEW YORK, Jan. 31, 2023 /PRNewswire/ — CurePSP has awarded a $90,000 grant for the pre-clinical and clinical development of a high-affinity...
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January 20, 2023
CurePSP launches a new annual grant program to promote collaboration and advance clinical care research
NEW YORK, Jan. 20, 2023 /PRNewswire/ — CurePSP has announced the recipients of the first Collaborative Approaches to Resources, Educati...
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November 17, 2022
CurePSP Expands Specialized Care Network for Rare Neurodegenerative Diseases
NEW YORK (November 17, 2022) /PRNewswire/ — CurePSP has announced the designation of Queen’s Parkinson’s and Movement Disorders Center in Hawaii...
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November 02, 2022
CurePSP is hiring! Join us in our mission!
Professional OpportunityDirector / Associate Director of Scientific Affairs and PartnershipsDOWNLOAD JOB DESCRIPTION HEREThe Opportunity:CurePSP seeks...
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November 02, 2022
Judy Coughlin, Wife of Former NFL Coach Tom Coughlin, Dies at 77
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 supra...
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September 30, 2022
Lecanemab for Alzheimer’s: “Proof of Principle” for PSP, CBD and MSA
By Lawrence I. Golbe, MD, Chief Clinical Officer and Scientific Advisory Board Chair, CurePSPGreat news for people with Alzheimer’s disease: A monoclo...
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September 27, 2022
Doing it for John: Bonelli Music Bash Returns for a Seventh Straight Year
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...
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September 22, 2022
CurePSP Joins the Unified Parkinson’s Advocacy Council
CurePSP is excited to announce that we have joined the Unified Parkinson’s Advocacy Council (UPAC)! UPAC was created by the Michael J. Fox F...
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September 19, 2022
The Ream Family Marches Past Their Goals
When Mary Kay Ream was diagnosed with progressive supranuclear palsy (PSP) in the fall of 2019 her family — husband Roger and daughters Alanna, Kelly,...
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August 23, 2022
CurePSP Summer Newsletter Out Now
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...
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August 10, 2022
For Carepartners, No Moment is More Important Than the Present
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 W...
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August 03, 2022
Through the generosity of the Light of Day Foundation, CurePSP has received a matching grant of $50,000!
Every dollar you give towards the Hope Tour will be doubled!DONATE NOWFor more than a decade, CurePSP and the Light of Day Foundation have partnered i...
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July 22, 2022
Dr. John Steele, Fondly Remembered
By Lawrence I. Golbe, MD Chief Clinical Officer, CurePSPThe PSP community mourns the passing of neurologist John C. Steele, MD on May 21, 2022, surrou...
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July 18, 2022
Andy Maus Assumes Board Chair Ready for Progress
Andy Maus knows that great systems aren’t built overnight. As the head of the Compass One Healthcare human resources department he oversees human reso...
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June 29, 2022
Diane Deaver Keeps it Moving Through her Quilts and Poetry
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 on...
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June 13, 2022
The AMULET study: A clinical research study for people living with MSA
To MSA patients and carepartners: at CurePSP, we work hard to follow developments by the pharmaceutical companies around the world that are advancing...
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May 25, 2022
CurePSP Elects Senior Healthcare Executive as Its Board Chair
Andy Maus will apply his personal and professional experience to advancing the foundation’s mission.NEW YORK, May 25, 2022 — CurePSP, the leadin...
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May 21, 2022
CurePSP Centers of Care Lean on Each Other to Improve Care of PSP, CBD and MSA
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 s...
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April 26, 2022
Ken’s Resilience: A Shared Ride for Hope and Support
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 Missis...
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April 18, 2022
Checking in on Previously Funded Venture Grants: Where Are They Now?
CurePSP has always believed in the collaborative nature of research. By combining the work of scientists who have produced compelling research in...
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April 05, 2022
Marty Rimestad Finds New Ways to Explore the Outdoors
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, Wis...
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March 21, 2022
Dr. Sally Temple Looks Ahead
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...
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March 15, 2022
Marco Island Takes its Biggest Step Towards a Cure Yet
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...
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October 21, 2021
CurePSP appoints former UNC Movement Disorders Center coordinator to its top programs position
Jessica Shurer, MSW, LCSWJessica Shurer will head the foundation’s patient and family support and help expand its Centers of Care.NEW YORK, Oct....
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September 14, 2021
CurePSP funds four new grants to advance treatment of prime of life neurodegeneration
Studies at leading institutions may result in therapeutic approaches for PSP, CBD, FTD, and related diseases.NEW YORK, Sept. 10, 2021 ...
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August 09, 2021
CurePSP appoints Dr. Kristophe Diaz as the foundation’s chief executive
Kristophe Diaz, PhDA scientist with broad experience in life sciences will lead the organization’s research, programs, and fundraising initiatives.NEW...
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July 06, 2021
CurePSP’s clinical guide to rare neurodegenerative conditions is published by leading neurology journal
Frontiers in Neurology today published a consensus statement on the best practices in the clinical management of progressive supranuclear palsy (...
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