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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Rush University Medical Center Caregiver Study

| By Sabrina Da Rocha
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 …

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In Conversation with John Burhoe, Sr.

| By Lucas Metherall
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

| By Lucas Metherall
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 …

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Global Citizen Festival, Ultimate VIP Tickets!

| By Lucas Metherall
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 …

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Sundaes to Stop PSP raised nearly $9,000 for CurePSP’s programs and services!

| By Sabrina Da Rocha
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 …

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CurePSP supports four new studies through its Venture Grants program

| By Sabrina Da Rocha
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 …

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Complexities With PSP

| By Lucas Metherall
Categories: Support News
This article by Niti Vaidya, our newest Peer Supporter in Mumbai, India, covers the small changes that occur with PSP that are often overlooked. Major complications that come with PSP, such as aspiration, UTIs, and the swallowing troubles that lead to aspiration, are always discussed with our doctors. However, because we, along with our doctors, …

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Types of Care and Care Facilities

| By Lucas Metherall
Categories: Support News
This article was written by CurePSP contributor and volunteer, Diane B. Breslow, MSW, LCSW. What follows is an overview of the spectrum of care and care facilities for adults with physical impairments or chronic disease. All of the levels discussed are potentially appropriate for people with PSP and related diseases. That said, it is extremely …

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Matching Grant Challenge!

| By Lucas Metherall
Categories: Support News
Dear Community, The Light of Day Foundation is teaming up with you once again, through the Hope Tour, to fight progressive supranuclear palsy (PSP) and related prime of life brain diseases by matching your gifts! Every dollar you give today up to $50,000 will be generously matched, so that your donation is doubled! $50 becomes …

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New Clinical Trial

| By Lucas Metherall
Categories: Research News
NEW CLINICAL RESEARCH TRIAL FOR PROGRESSIVE SUPRANUCLEAR PALSY (PSP) IS NOW RECRUITING   Progressive Supranuclear Palsy (PSP) is a neurodegenerative disease. In brain cells affected by PSP, there is an abnormal accumulation of a protein called tau. Tau protein forms “tangles” in the brain cells. It can spread outside the affected brain cell in the …

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Remember Me Dancing

| By Lucas Metherall
Categories: Advocacy
This article was published in the Tallahassee Democrat, May 19, 2018   I talked to my mother on Mother’s Day. Only it’s not really talking anymore; often all she can muster is a wail of lament. I know why she is wailing. It’s this horrible disease, progressive supranuclear palsy. It is killing her, breaking down the …

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CurePSP Receives Two-Year Grant from the Stavros Niarchos Foundation to Support Families with Caregiving Burdens

| By Lucas Metherall
Categories: Support News
Grants are administered by CurePSP through its Cherie Levien Quality of Life Fund, supported by the Levien family, the Stavros Niarchos Foundation, and other donors. CurePSP has received a two-year grant from the Stavros Niarchos Foundation (SNF) to support the Cherie Levien Quality of Life Fund, established in 2017 in memory of Mrs. Levien by …

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Question and Answer with Ileen McFarland

| By Lucas Metherall
Categories: Advocacy, Support News, Volunteer
Ileen McFarland, CurePSP Board Member and Dallas support group facilitator, talks to us about her upcoming event, Hope Squared, and about the motivation behind being one of CurePSP’s most active advocates. What is your history with PSP and caregiving? My late husband was diagnosed with Parkinson’s in September of 2006, and PSP in 2007.  After …

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Time To Go

| By Lucas Metherall
Categories: Advocacy, Support News
This story comes to us from Rio Contrada, a young filmmaker and producer whose father, Fred Contrada, has progressive supranuclear palsy (PSP). Rio is making a short film based on his father; the crowdfunding link to support his project is below.   I was 25 years old when the accident happened. My girlfriend and I …

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CurePSP Teams Up With the Tau Consortium

| By Lucas Metherall
Categories: Research News
    CurePSP and the Rainwater Charitable Foundation Launch the Prime of Life Brain Initiative The initiative will support neurodegeneration research with goal of finding treatment and cure NEW YORK, April 10, 2018 – CurePSP and the Rainwater Charitable Foundation (RCF) today announced their landmark partnership in the Prime of Life Brain Initiative, an unprecedented …

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Words From a Caregiver in India

| By Lucas Metherall
Categories: Support News
In this beautifully written article on caregiver care, Niti Vaidya from India shows us that caregiving for a PSP sufferer is the same the world over. it takes forgiveness, humility, patience, and kindness, and it’s OK if you run out of these things from time to time. Caregiver Breathers, by Niti Vaidya Being a caregiver …

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Right to Try

| By Lucas Metherall
Categories: Advocacy, News
Washington, D.C., March 14, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement in regards to last night’s vote in the House of Representatives on the latest version of the Right to Try Act: “Yesterday evening, the House of …

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An Opportunity to Share Your Experience

| By Lucas Metherall
Categories: Research News
We have been informed of a research project by a company wishing to learn, in detail, the patient and carepartner journey. This information will inform potential drug developers’ clinical trial operations and processes, to make clinical trial attendance as suitable as possible to the patient and carepartner. The interview, among other things, will cover a …

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Navigating Veterans’ Affairs for PSP Sufferers

| By Lucas Metherall
Categories: Advocacy, Support News
One Family’s Struggle Inspires Them to Help Others This article appears in our Spring 2018 Newsletter. From 1967 to 1971, Thyra Burakowski’s husband, Anthony (Tony), worked for the United States Navy, and was in Vietnam from 1968 to 1969. “I cannot tell you much about Vietnam because Tony did not speak about it at all,” …

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NORD to Collaborate with FDA on Pilot Patient Engagement Activity

| By Lucas Metherall
Categories: Advocacy
Posted by Christina Jensen, National Organization for Rare Disorders website, February 28, 2018   Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced a collaboration with the Food and Drug Administration (FDA) on a pilot project that would …

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10 Documents Every Caregiver Needs

| By Lucas Metherall
Categories: Support News
Article by Lori Thomas, February 27, 2018, SeniorAdvice.com Being a caregiver can sometimes be an overwhelming responsibility. Whether you are caring for a parent, a loved one, a friend or even an acquaintance—this role requires a great deal of time and commitment. Caregivers not only need to provide daily support for those they look after, …

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Currently Funded Research – CurePSP

| By Lucas Metherall
Categories: Research News
Developing Treatments for Swallowing and Communication Deficits in PSP Dr. Michelle S. Troche, Columbia University CurePSP is very excited to fund Dr. Troche’s research in an often overlooked area of care for PSP patients: swallowing and communication. Results of this study could have direct implications on how PSP patients are treated to improve their swallowing …

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Simple Walking Test May Help Make Difficult Diagnosis

| By Lucas Metherall
Categories: Research News
AMERICAN ACADEMY OF NEUROLOGY\ PUBLIC RELEASE: 21-FEB-2018 MINNEAPOLIS – There’s a cause of dementia that can sometimes be reversed, but it’s often not diagnosed because the symptoms are so similar to those of other disorders. Now researchers say a simple walking test may be able to accurately diagnose the disease, according to a study published the …

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NORD Statement Regarding State Proposals to Alter Their Medicaid Program

| By Lucas Metherall
Categories: Advocacy, Support News
Posted by Laura Mullen Washington, D.C., February 8, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding recent state proposals to alter their Medicaid program by utilizing the federal 1115 Waiver process: “In an attempt to control health care …

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Caregiver Stress and Burnout 

| By Lucas Metherall
Categories: Support News
Tips for Regaining Your Energy, Optimism, and Hope  an excerpt from the 2018 CurePSP Guidebook The demands of caregiving can be overwhelming, especially if you feel you have little control over the situation or you’re in over your head. If the stress of caregiving is left unchecked, it can take a toll on your health, relationships, …

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A Free Webinar, by Janet Edmunson

| By Lucas Metherall
Categories: Support News
Minimizing Caregiver Fatigue by Janet Edmunson, M.Ed. For family and professional caregivers Tuesday, March 6, 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) Webinar will be approximately 30-40 minutes in length. Register online today by clicking the link below. Or paste …

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New Sleep Pattern Clinical Trial for PSP Patients

| By Lucas Metherall
Categories: Research News
Study Currently Not Recruiting For more information, contact Dr. Christine Walsh at Christine.Walsh@ucsf.edu About the Study The goal of this study is to improve the quality of life of individuals with PSP by improving their sleep through a remote trial process. Research shows that individuals with PSP often have profound sleep disruption. Not only were these …

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Tau Pipeline Enabling Program (T-PEP)

| By Lucas Metherall
Categories: Research News
The Rainwater Foundation is proud to announce that the Tau Consortium has just launched a new matching grant program with The Alzheimer’s Association. It’s called the Tau Pipeline Enabling Program (T-PEP), and its goals is to accelerate the discovery of potential new therapies for tauopathies, including Alzheimer’s (AD), Frontotemporal Dementia (FTD), and Progressive Supranuclear Palsy …

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CurePSP Forum To Be Replaced

| By Lucas Metherall
Categories: Support News
Brain circuitry
For years the current CurePSP forum has been an amazing resource for people to connect on matters most relevant to them, with people dealing with the exact same issues. The forum is currently moderated by a superstar volunteer, a Mr. Ed. Plowman, who has worked tirelessly to read absolutely every single post and manage new …

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Response to Senate Vote on the Orphan Drug Tax Credit

| By Lucas Metherall
Categories: News
This statement was released by the National Organization for Rare Diseases (NORD), on Dec. 2, 2017, in response to the passing of a tax bill that has serious implications for drug development for rare diseases. Washington, D.C., December 2, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million …

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