Latest News from The Foundation

June 07, 2024

CurePSP and Congresswoman Jennifer Wexton Advocate for Rare Diseases at Brain and Environment Symposium

The CurePSP team attended the Brain and Environment Symposium in Washington DC on May 20, exploring the impact of environmental toxins on brain h...

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June 04, 2024

CurePSP and Congresswoman Wexton collaborate on congressional briefing on progressive supranuclear palsy

NEW YORK, June 4, 2024 /PRNewswire/ – CurePSP was on Capitol Hill on May 21 for a briefing focused on progressive supranuclear palsy (PSP). Often init...

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May 24, 2024

Breaking News: The National Plan to End Parkinson’s Act Passes the Senate, Moves to the White House

The U.S. Senate unanimously passed the “Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act” yesterday, the firs...

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May 24, 2024

Congress Rallies Around Colleague Jennifer Wexton as She Leads 100 Members in Bipartisan Resolution to Recognize May as PSP Awareness Month

Congresswoman Jennifer Wexton does not want sympathy. She wants the public to learn more about progressive supranuclear palsy (PSP), the disease affec...

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May 23, 2024

Wexton Leads 100 Members in Bipartisan Resolution to Recognize May as PSP Awareness Month

Washington, DC – May 23, 2024 – Today, Congresswoman Jennifer Wexton (D-VA) introduced a bipartisan resolution to officially recognize May a...

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May 22, 2024

Join Congresswoman Jennifer Wexton's Digital Day of Action for Month of Awareness!

CurePSP is joining forces with Congresswoman Jennifer Wexton and her team to spread awareness at a federal level for Month of Awareness! To continue b...

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May 10, 2024

Introducing a Bill to the House Floor Despite Her Diagnosis, Congresswoman Jennifer Wexton Continues Shifting the Narrative Surrounding Rare Diseases

The constituents of Virginia’s 10th district have a tenacious and unwavering advocate in Congress – and she has progressive supranuclear palsy (PSP).I...

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May 03, 2024

Virginia designates May as Progressive Supranuclear Palsy Month of Awareness

The Virginia General Assembly has designated May, in 2024 and in each succeeding year, as Progressive Supranuclear Palsy Month of Awareness in Virgini...

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April 25, 2024

CurePSP Provides Resources and Education to Clinicians at AAN 2024

Last week the CurePSP team headed to Denver, Colorado for the American Academy of Neurology’s (AAN) Annual Meeting. The AAN Annual Meeting provides a...

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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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March 14, 2024

Advancing PSP and CBD Research: CurePSP Announces Latest Pathway and Pipeline Grant Recipients

NEW YORK, March 14, 2024 /PRNewswire/ — CurePSP has awarded its latest Pathway and Pipeline Grants, totaling approximately $400,000. Recipients of the...

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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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