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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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, …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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, …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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. …
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 …
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. …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …
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 …