Types of Care and Care Facilities

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!

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

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

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

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

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

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

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

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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CurePSP is hiring! Join us in the fight!

Categories: News

  GIFT PROCESSING & DATA QUALITY COORDINATOR Position Location: Lutherville, Maryland To Apply: email your CV and a cover letter outlining how your experience suits this role to: jobs@curepsp.org Position is hourly and nonexempt. CurePSP, Inc. is a nonprofit organization with a mission of creating awareness, care and cure for devastating prime of life neurological …

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Right to Try

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

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

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

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

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

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

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

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 

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

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

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)

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

Categories: Support News

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

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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Holiday Hints For Caregivers

Categories: Support News

This article, courtesy of the National Institute of Aging, goes through some ways for carepartners to survive the madness that is the holiday season.   Tips include:   Celebrate holidays that are important to you. Include the person with PSP, CBD, MSA, or related diseases as much as possible. Set your own limits, and be …

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The Monster Corralled

Categories: Support News

This article by John Royer, our dear PSP correspondent who sadly passed away in September, is the last PSP article he wrote. John’s insight and ability to voice the experience of having PSP has brought comfort and solace to many facing the same journey, and he is dearly missed.   August 28, 2017 I started …

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Make Meaning to Stay Positive

Categories: Support News

November is carepartner month, so we will run a series of articles taken from our new Guidebook on caregiving. For all of you heroes out there, we are thinking of you. By Janet M. Edmunson, MEd Taken from her book, Finding Meaning with Charles, and used with permission.   It wasn’t until about the third …

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A Mother’s Hands

Categories: Support News

I wrote this before my New York Times story posted about a year ago and submitted it as an alternative essay on my mother. I am posting this here because I learned that many, many people read my NYT story online and realized their parent had this very condition based on my mother’s symptoms and …

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The Crippled Trio

Categories: Support News

The 22nd article by John Royer, our PSP correspondent who tragically passed this past September, is full of his usual humor as he faces the Monster, PSP.   The Crippled Trio by John Royer   I have been talking to my nephew for the last few days over the Internet. He is 58 years of …

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Announcement regarding a recent press release from Dthera Sciences

Categories: Research News

Dthera Sciences recently announced its participation in a pilot program with CurePSP on Dthera’s ReminX digital therapeutic that is intended to reduce anxiety, anger, stress, and depression among PSP patients. Data that were reported were developed from a pilot study based on initial reports from 10 participants who are patients diagnosed with PSP. The study …

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Care Where It Counts: Understanding the Needs of People with PSP and Related Disorders

Categories: Research News

      CurePSP is proud to support this survey by our friends at NYU Langone, and Rush University – Care Where it Counts: Understanding the Needs of People with PSP and Related Disorders. Goals People with Progressive Supranuclear Palsy and related disorders like Multiple System Atrophy and Corticobasal Syndrome may have trouble accessing the …

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My Thoughts on Anomalies

Categories: Support News

This article by John Royer, who sadly passed away from PSP in September, imagines a world where someone has recovered naturally from PSP. If only that were possible.   August 12, 2017 It’s time to go back to doing what I used to do. I’ve experimented with letting you know what it’s like to try …

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My Life in a Nutshell

Categories: Support News

This article, the 20th by John Royer, our friend who has sadly passed form PSP in September, 2017, is a brief recounting of his life. John wanted us to know what it’s like trying to communicate while being affected by strokes and PSP, so this article is unedited. This is how John spoke.    August …

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False alarm and PSP awareness, by John Royer

Categories: Support News

This article, was written in August by John Royer, our beloved and cherished PSP correspondent who sadly passed away on Sept. 10, tells us about the progression of PSP, but still contains that indelible spirit we have come to love. False alarm and PSP awareness   It is Tuesday, August 1, 2017 and I have …

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My Feelings on Death, by John Royer

Categories: Support News

As you may know, John Royer is sadly no longer with us. His spirit, humor, and strength went to another dimension (to paraphrase John), on September 10 of this year.  This article was written late July, and is as heartfelt and brave as any he has written, and features his thoughts on mortality and the …

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VIP Tickets to the Global Citizen Festival

Categories: News

With thanks to Global Citizen, CurePSP has two tickets for sale to the Ultimate VIP section of the Global Citizen Festival, Sept. 23, Great Lawn, Central park. Headlining the festival is Stevie Wonder, with other acts including The Killers, Green Day, The Lumineers, and more.  The Ultimate VIP Tickets are available at their regular retail …

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RIP John T. Royer

Categories: Support News

Funny is Good   In the midst of winter, I finally learned there was in me an invincible summer. Albert Camus   We were saddened to learn of the untimely death on September 10 of John T. Royer at the age of 71. John became the voice of the PSP patient with his honest, perceptive, …

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Speech Therapy after 2nd Stroke

Categories: Support News

This article, by our man on the inside, our PSP correspondent, John Royer, gives us an insight into the effects of PSP, and strokes, on his language ability.   Speech Therapy after 2nd Stroke by John Royer   I had a stroke and it adversely affected my brain. It has had a number of negative …

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My Thoughts About Life And A Friend

Categories: Support News

John Royer’s latest article takes us through his conversations with a friend and fellow PSP sufferer. By John Royer It is July 13, 2017 and a very hot day. Rain is on the way.   This morning I had a phone call from my friend Ron. He has PSP as well. Our symptoms are similar …

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PSP and a Stroke Make Things Interesting

Categories: Support News

The latest article from John Royer, as he thinks about the effects of PSP on his body and mind. It is July 8, 2017 and I have absolutely no idea of what to talk about. The only thing that can rectify that problem is to let my mind wander and see what it will come …

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I Had a Major Stroke On Friday

Categories: News

By John Royer, our writer extraordinaire, detailing his observations as he deals with PSP.   June 30, 2017. Friday. I had a major stroke on a Friday. It started like any other day except for two exceptions. I could not understand a sentence or making coherent conversations. I sounded really funny. We quickly went to …

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PSP Inspires Prize-Winning Art

Categories: News

Inspired by Her Husband’s PSP, Loudonville Woman Wins Art Award   By JIM BREWER, Published in the Times-Gazette, July 28, 2017   LOUDONVILLE — Just recently, Janet Marsano, of rural Loudonville, received an Award of Excellence for her intricate layered drawing depicting her husband’s plight; He suffered from a condition called Progressive Supranuclear Palsy (PSP) that …

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Was it the Anesthesia?

Categories: Support News

A new article from John Royer, our PSP correspondent, our man on the inside, questioning the causes of PSP.    It is June 16, 2017. I start today with the same Frankenstein movement and dizziness as on every other day. In other words, I am a mess. As the day progresses my dizziness diminishes and …

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About my Lola, by Bronte Ficek

Categories: Support News

In Tagalog, the native language of the Philippines, Lola means grandmother. My Lola, Mercy Lotilla Asencio (pictured), lived in General Santos City, at the southern tip of the Philippines. She was the mother of seven children; my mom is the oldest of those seven, and I am the third oldest grandchild of 15. As a …

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Brain Food: Diet and Brain Health

Categories: Research News

Brain Food: Can the foods you eat enhance brain health, or even help manage a neurologic condition? We spoke to the experts about popular diets and reviewed the evidence to find the answers. This article was first published by Marisa Cohen in Neurology Now, June/July 2017, Vol 13.   We eat for energy, for sustenance, …

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Other-World Imaginings, by John Royer

Categories: News, Support News

  From our man on the inside, our PSP correspondent, John Royer. The following is a fictional story John wrote when in a depressed state in 2016, in order to relieve stress   I had been sick, sick with a neurological disorder that was slowly killing me. I remember the end stage. I had choked on …

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A Good Mind In A Useless Body.

Categories: Support News, Volunteer

This very insightful article, by John Royer, our PSP correspondent, argues that PSP can’t take your loved one away if you don’t let it.    I’ve been noticing that a lot of people say that their spouse or parent is gone because they cannot speak, they cannot communicate. I think it is a mistake to …

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Anti-Tau Drugs for PSP Move into Phase II

Categories: Research News

This article first appeared in MedPage Today (http://www.medpagetoday.com/meetingcoverage/mds/65883) by Kristina Fiore, Deputy Managing Editor, MedPage Today June 08, 2017 VANCOUVER — Two companies are working on anti-tau monoclonal antibodies for progressive supranuclear palsy (PSP), although one withdrew its phase I results just ahead of the scheduled presentation at the Movement Disorder Society meeting here. AbbVie’s ABBV-8E12 and Bristol-Myers …

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Open Heart Surgery, by John Royer

Categories: News, Support News

Today I am going to write about something different. Earlier in one of my articles I said that I would not talk about the open-heart surgery but I’ve changed my mind. It is worth going over because I can find something humorous about something as serious as that as well as anything. It was August …

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