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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Harnessing Technology for Quality of Life

Categories: Research News

Can memories uplift mood? Does better mood equate to better quality of life? DThera is hoping to find out if simple technology, loaded with family stories, voices and memories can improve quality of life. CurePSP is pleased to announce our collaboration with DThera, a company that is utilizing technology toward the goal of improving the …

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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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Three Urso Student Summer Fellowship Grants Awarded

Categories: Research News

The Urso Summer Student Program in PSP Research supports students conducting summer research projects focused on progressive supranuclear palsy. This program seeks to encourage students at all post-secondary levels to pursue research in this field in the hope of making PSP a long-term area of research interest. Projects may be in basic, translational, clinical or …

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CurePSP-Affiliated Study Needs you!

Categories: Research News

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 healthcare that they need, which may affect their quality of life and that of their caregivers. This may be due …

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A Hospital Stay, by John Royer

Categories: Support News

In his 9th article, John Royer remembers a hospital visit where he discovered he had unknowingly suffered a stroke months prior.    There is a hospital stay that I forgot to mention that occurred at the end of 2015 and extended slightly into 2016. I blame the oversight on PSP. Of course, I blame all …

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Square patches of light remember you

Categories: Support News

This beautiful poem, by Bronte Nicole Ficek, originally published in Neurology, June 2017, is a tribute to her grandmother, Mercy Lotilla Asencio. Read her personal story here.   Square patches of light remember you   Square patches of sunlight blanketing my piano Remember you today, Lola. They speak of a baby-pink end of life, somehow beautiful in your …

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Coffee and Breakfast, by John Royer

Categories: News

This morning my wife said let’s go out to breakfast. I was a little bit reluctant because of my poor walking but I showed enthusiasm. My upper body wasn’t working well so my wife helped me on with my coat. That’s something I used to do for her when we were younger. More of my …

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A New Understanding of How Our Brains Work

Categories: Research News

Blue Brain Team Discovers a Multi-Dimensional Universe in Brain Networks Source: NEUROSCIENCE NEWS, JUNE 12, 2017 This article, appearing in Neuroscience News, reveals a new level of understanding that will force a re-think on brain science.  Using mathematics in a novel way in neuroscience, the Blue Brain Project demonstrates that the brain operates on many dimensions, not …

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Update from John Royer, PSP Correspondent

Categories: News, Volunteer

This is article seven from John Royer, a man living as humorously as possible with PSP. Last night I was wondering about a cause for PSP. I thought about the fact that since I was born in 1945 I have been inhaling radioactive dust along with everyone else alive today. I also considered other factors. …

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Light Of Day Grant CurePSP $80,000

Categories: News

Early in 2017, Tony Pallagrosi confirmed that the Light of Day Foundation would be repeating the $80,000 matching grant challenge with CurePSP.  CurePSP created a campaign to our donors and supporters, in letters and online, and the results far exceeded our expectations.  Our community raised $160,000 in answer to the challenge, meaning together we raised …

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Update from John Royer, PSP Correspondent

Categories: Support News, Volunteer

This is article six from John Royer, a man living as humorously as possible with PSP. It’s the middle of May and I feel better and I haven’t fallen once. My early-morning dizziness is still with me but it is not as bad as it used to be. My walking varies from hour to hour. …

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Update from John Royer, PSP Correspondent

Categories: Help News, Support News

This is article five from John Royer, a man living as humorously as possible with PSP.   It is a day that is not so good for me. My mood is glum. I get dressed with great difficulty, and Mary puts my socks on for me, a feat that I cannot do anymore. And then …

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Update from John Royer, PSP Correspondent

Categories: Support News

This is article four from John Royer, a man living as humorously as possible with PSP.   I thank the physical therapist that I have, namely Ryan Macalintal of the GOOD SHEPHARD REHABILITATION HOSPITAL in Allentown, Pennsylvania. Without Ryan and his organization, I would not be able to do the things that I am going …

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CurePSP Venture Grant Goes to Dr. John Steele.

Categories: Research News

Dr. John W. Steele has been awarded a CurePSP Venture Grant for a study titled “iCRISPRi in Human neurons and Glia to Elucidate Selective Turnover of Tau.” At least 13 diseases are classified as tauopathies and, collectively, this common neuropathology affects more than 5.5 million Americans, including military personnel and professional athletes who suffer from …

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Dr Troche Awarded a CurePSP Venture Grant

Categories: Research News

Michelle S. Troche, PhD/CCC-SLP, has been awarded a CurePSP Venture Grant for her research project titled “Developing Treatments for Swallowing and Communication Deficits in Progressive Supranuclear Palsy (PSP).” This project won the approval of the Scientific Advisory Board for its strong scientific merits and great impact on PSP patients’ quality of life. Swallowing and communication disorders …

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John Royer, thoughts of a PSP patient

Categories: Support News

This is the third installment from John Royer, our correspondent with PSP.  See his first article here. See his second article here.    You can find out all you want about PSP by searching the Internet. You will find that there are PSP sites in all the countries that speak English. I can’t speak for …

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An Update From John, a PSP patient.

Categories: Support News

  A short while ago we received a letter from John Royer, a man living with PSP, and we placed it on our blog.  We suggested we could post more of his thoughts, and he sent us this: Dizziness upon sitting up in the morning. When I sit up in the morning the view opposite …

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Presenting at the Addison Rotary Club, Dallas

Categories: News, Volunteer

On Friday, April 7, CurePSP Chair Emeritus and long-time neurodegeneration advocate, John Burhoe Sr.,  presented to the Addison rotary Club, Dallas, on progressive supranuclear palsy (PSP) and related brain diseases. His talk encompassed the pathology of PSP, and how research into a cure for PSP potentially means treatment and cure for other brain diseases such as …

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A message from John, who has PSP.

Categories: Support News

  This beautiful article was sent to us by one of our community, John Royer, who has PSP. Thank you John, for sharing these words.      PSP is a shortened version, an acronym for Progressive Supranuclear Palsy. It’s a tough name to say. PSP is easier. It describes what I have. The life span …

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Why Advocacy is Vital

Categories: Support News, Uncategorized, Volunteer

In this article, Trish Caruana, Vice President – Patient and Carepartner Advocacy explains what advocacy is, and the common hurdles people face when considering advocacy. Care, consciousness and cure are central to the mission of CurePSP, but how we advocate for people with PSP and other prime of life diseases is also important. The lack of …

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$80,000 Matching Grant from the Light of Day Foundation!

Categories: Help News

    IMPORTANT UPDATE! As of Wednesday, April 12, the CurePSP community had raised over $60,000! That puts us on track to beat all records for matching this grant, thanks to you. Please know that your donations help families to learn about a disease they may never have heard of before diagnosis, connects people to …

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Breakthrough in clearing toxic misfolded tau, in the Daily-Star, Jan 26

Categories: Research News

          With $100 million from Rainwater family, brain research hits stride BY STEVE KASKOVICH, Star-Telegram, January 26 More than a year after Fort Worth billionaire Richard Rainwater lost his battle with a degenerative brain disease, his quest to find a cure is making progress. A group of top doctors and neuroscientists …

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A children’s book, explaining PSP and other disorders.

Categories: Support News
  One of our community, Richie Morris, whose mother has PSP, is writing and publishing a book for children, to help explain the changes they observe taking place in their beloved family member. In Richie’s words;  “Every summer for a couple of weeks my mother, father, brother and I (including our closest friends), vacationed at …

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An article by one of our community

Categories: Support News

One of the CurePSP community has written this beautiful article on the intricacies of finding love again.  Article by Joanna McFarland Owusu. Posted on Bluntmoms.com, Dec. 2016 With Christmas almost upon us, I find myself ruminating on a moment last October at the State Fair of Texas, of all places. Every year we make an …

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13-Year-Old Abby Sayre Starts CBD Fundraiser In Memory Of Grandmother Mary Kay

Categories: News

Abby Sayre has started a fundraiser on behalf of her grandmother, Mary Kay Withrow. Mary Kay was diagnosed with Corticobasal Degeneration (CBD). CBD is a neurodegenerative disease that has no known cause, treatment or cure. It affects nerve cells that control walking, balance, mobility, vision, speech and swallowing. She required assistance in every area of her …

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President Obama Signs 21st Century Cures Act

Categories: News

It is official! The 21st Century Cures Act has been signed into law by President Barack Obama.    “We’re tackling cancer, brain disease, substance abuse disorders and more, and none of this work would have been possible without bipartisan cooperation,” Obama said during a signing ceremony at the White House.

NINDS/NIH/NIA Funding Opportunity Announcement

Categories: Research News

NINDS/NIH/NIA Funding Opportunity Announcement to support the genetic discovery in PSP, CBD, and related disorders. There will be a pre-application informational webinar on December 20, 2016 from 11:00-1:00 pm EDT. The webinar will provide a brief introduction to the FOA, and highlight key components and requirements of the different phases of this grant mechanism.    …

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CurePSP receives $200,000 from Nesbitt Charitable Foundation to fund two studies.

Categories: Research News

CurePSP donor funds two innovative studies of PSP Nesbitt grant supports research into both care and cure   New York, NY (November 16, 2016) — CurePSP, the leading nonprofit advocacy organization focused on prime of life neurodegenerative diseases, has received a donation from the Nesbitt Charitable Fund, Houston, Texas, of $200,000 to fund two research …

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Dr. Brent Bluett Talks About Botox and Therapy For PSP Patients

Categories: Research News

Ask a Doctor: Dr. Brent Bluett on PSP by Sylvia Rupani-Smith Very few patients with a rare brain disease such as Progressive Supranuclear Palsy, or PSP, have the liberty of choosing a doctor. It’s hard to find a doctor who even knows what the condition is, much less find a specialist for it. When you …

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2016 CurePSP International Research Symposium

Categories: Research News

2016 CurePSP International Research Symposium             October 27, Jersey City, NJ — Starting with a networking session on the evening of Thursday, October 27, and following with a full day of speakers on Friday the 28th, the 2016 International Research Symposium has surpassed all expectations. A record 148 registrants, with some coming from countries as …

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PSP on the front page of the New York Times!

Categories: News
Sylvia Rupani-Smith, long-time friend of CurePSP and strong advocate for the cause, brings PSP awareness to the mainstream media with her article about her mother’s diagnosis and journey with PSP being published in the New York Times, October 20, 2016 See the full article below.    The Falls Were Bad. The Diagnosis Was Worse. “She …

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CurePSP Women’s Luncheon, New York, NY

Categories: News

In honor of Women and Prime of Life Brain Disease Research, CurePSP recently brought together the most eminent investigators and accomplished women to discuss the latest developments in neurodegenerative research. Moderated by Tal Nuriel PhD, the lunch took place in New York and saw presentations from Alison Goate, PhD, Mo Liu, PhD, Sally Temple, PhD, …

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New York Opens First Support Group!

Categories: Support News, Volunteer

We are very happy to announce our first support group in New York!   Our New York Support Group Leader Training sessions in August were a great success, and we can happily announce the following support group for PSP patients and carepartners, in Manhattan, NY. The support group meeting will be held; October 11th, at …

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The role of caregiver; Kathryn Leigh Scott

Categories: Support News

Originally printed in The Timberjay. By Jodi Summit. Growing up on a small family farm outside of Minneapolis, Kathryn Leigh Scott loved to write and put on plays, often casting her little brother, Orlyn Kringstad of Tower, in roles that required him to don wedding dresses. The children, Orlyn explained while introducing his sister to …

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UPenn-Led Consortium Awarded $10.8M NIH Grant to Study Genomics of Alzheimer’s Disease

Categories: Research News

  UPenn-Led Consortium Awarded $10.8M NIH Grant to Study Genomics of Alzheimer’s Disease Jun 24, 2016 |a GenomeWeb staff reporter   NEW YORK (GenomeWeb) – The Perelman School of Medicine at the University of Pennsylvania announced today that it has received a grant from the National Institutes of Health’s National Institute on Aging to establish …

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CurePSP Receives Matching Grant Challenge for Genetics Research

Categories: Research News, Uncategorized

Friedman family has committed up to $600,000 New York, NY (June 29, 2016) — CurePSP, the leading nonprofit advocacy organization focused on prime of life neurodegenerative diseases, today announced a matching grant challenge of up to $600,000 from the Friedman family to accelerate genetics research. An initial contribution of $250,000 toward this goal has been …

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CurePSP receives second matching grant from the Light Of Day Foundation

Categories: News, Support News

Leading worldwide music tour benefits neurodegeneration causes   New York, NY (August 17, 2016) — CurePSP, the leading nonprofit advocacy organization focused on prime of life neurodegenerative diseases, has received a matching grant of $80,000 from the Light Of Day Foundation that will help to fund the foundation’s programs in patient and family care, education …

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Jennings Kroemer Putt For PSP

Categories: Support News, Volunteer

On Saturday July 30th the Jennings and Kroemer families hosted the 11th annual Putt For PSP, in Syracuse Indiana. The day was a huge success, and CurePSP’s very own Director of Events Jaclyn Zendrian attended. “I want to go again next year,” said Jaclyn, ‘everyone was really nice and the location was spectacular.” The money …

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