Latest News & Blogs from The Foundation
September 10, 2018
Sundaes to Stop PSP raised nearly $9,000 for CurePSP’s programs and services!
Suburban Chicago Support Group’s First Fundraiser A Sweet SuccessBy Kathleen LoudenThe Glenview, Ill., CurePSP Support Group held our inaugural fundra...
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July 25, 2018
CurePSP supports four new studies through its Venture Grants program
Research will study genetic factors and tau-protein pathologies in progressive supranuclear palsy (PSP)NEW YORK–(BUSINESS WIRE)— CurePSP, the foundati...
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July 23, 2018
Complexities With PSP
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...
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July 20, 2018
Types of Care and Care Facilities
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 car...
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July 19, 2018
Matching Grant Challenge!
Dear Community,The Light of Day Foundation is teaming up with you once again, through the Hope Tour, to fight progressive supranuclear...
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June 18, 2018
Remember Me Dancing
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;...
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June 12, 2018
New Clinical Trial
NEW CLINICAL RESEARCH TRIAL FOR PROGRESSIVE SUPRANUCLEAR PALSY (PSP) IS NOW RECRUITING Progressive Supranuclear Palsy (PSP) is a neurodegen...
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June 06, 2018
CurePSP Receives Two-Year Grant from the Stavros Niarchos Foundation to Support Families with Caregiving Burdens
Grants are administered by CurePSP through its Cherie Levien Quality of Life Fund, supported by the Levien family, the Stavros Niarchos Foundation, an...
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May 03, 2018
Question and Answer with Ileen McFarland
Ileen McFarland, CurePSP Board Member and Dallas support group facilitator, talks to us about her upcoming event, Hope Squared, and about the motivati...
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April 23, 2018
Time To Go
This story comes to us from Rio Contrada, a young filmmaker and producer whose father, Fred Contrada, has progressive supranuclear palsy (PSP). Rio is...
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April 11, 2018
CurePSP Teams Up With the Tau Consortium
CurePSP and the Rainwater Charitable Foundation Launch the Prime of Life Brain InitiativeThe initiative will support neurodegeneration research with g...
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April 06, 2018
CurePSP Receives Generous $4,700 Grant From Community Foundation of Middlesex County
March 31, 2018 – New York, New York. CurePSP has received a generous grant of $4,700 from the Community Foundation of Middlesex County (CFMC)/Ryan’s C...
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April 05, 2018
Words From a Caregiver in India
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....
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March 15, 2018
Right to Try
Washington, D.C., March 14, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representi...
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March 06, 2018
An Opportunity to Share Your Experience
We have been informed of a research project by a company wishing to learn, in detail, the patient and carepartner journey. This information will infor...
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February 28, 2018
NORD to Collaborate with FDA on Pilot Patient Engagement Activity
Posted by Christina Jensen, National Organization for Rare Disorders website, February 28, 2018 Washington, D.C., February 28, 2018—The National...
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February 27, 2018
10 Documents Every Caregiver Needs
Article by Lori Thomas, February 27, 2018, SeniorAdvice.comBeing a caregiver can sometimes be an overwhelming responsibility. Whether you are car...
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February 26, 2018
Currently Funded Research – CurePSP
Developing Treatments for Swallowing and Communication Deficits in PSPDR. MICHELLE S. TROCHE, COLUMBIA UNIVERSITYCurePSP is very excited to fund Dr. T...
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February 22, 2018
Simple Walking Test May Help Make Difficult Diagnosis
AMERICAN ACADEMY OF NEUROLOGY\PUBLIC RELEASE: 21-FEB-2018MINNEAPOLIS – There’s a cause of dementia that can sometimes be reversed, but it’s often...
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February 20, 2018
NORD Statement Regarding State Proposals to Alter Their Medicaid Program
Posted by Laura MullenWashington, D.C., February 8, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organi...
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February 18, 2018
Navigating Veterans’ Affairs for PSP Sufferers
One Family’s Struggle Inspires Them to Help OthersThis article appears in our Spring 2018 Newsletter.From 1967 to 1971, Thyra Burakowski’s husband, An...
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February 02, 2018
Caregiver Stress and Burnout
Tips for Regaining Your Energy, Optimism, and Hope an excerpt from the 2018 CurePSP GuidebookThe demands of caregiving can be overwhelming, espec...
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January 22, 2018
A Free Webinar, by Janet Edmunson
Minimizing Caregiver Fatigueby Janet Edmunson, M.Ed.For family and professional caregiversTuesday, March 6, 2018(The webinaralso will be recorded for...
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January 18, 2018
Launching the New Forum!
CurePSP is proud to present the new forum to our community of people affected by PSP, CBD, and related prime of life brain diseases.The previous forum...
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January 18, 2018
New Sleep Pattern Clinical Trial for PSP Patients
Study Currently Not RecruitingFor more information, contact Dr. Christine Walsh at Christine.Walsh@ucsf.eduAbout the StudyThe goal of this s...
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December 14, 2017
Tau Pipeline Enabling Program (T-PEP)
The Rainwater Foundation is proud to announce that the Tau Consortium has just launched a new matching grant program with The Alzheimer’s Association....
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December 07, 2017
CurePSP Forum To Be Replaced
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...
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December 04, 2017
Response to Senate Vote on the Orphan Drug Tax Credit
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...
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December 01, 2017
Holiday Hints For Caregivers
This article, courtesy of the National Institute of Aging, goes through some ways for carepartners to survive the madness that is the holiday season.&...
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November 21, 2017
The Monster Corralled
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 abilit...
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November 15, 2017
CurePSP Support Group Initiative Goes Global This Giving Tuesday.
This press release was published at 10am Wednesday, November 15, in PR Newswire. NEW YORK, Nov. 15, 2017 /PRNewswire/ — CurePSP, t...
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November 10, 2017
Make Meaning to Stay Positive
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...
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November 07, 2017
Mother’s Hands
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...
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November 03, 2017
The Crippled Trio
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, P...
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October 25, 2017
Announcement regarding a recent press release from Dthera Sciences
Dthera Sciences recently announced its participation in a pilot program with CurePSP on Dthera’s ReminX digital therapeutic that is intended to reduce...
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October 24, 2017
Care Where It Counts: Understanding the Needs of People with PSP and Related Disorders
CurePSP is proud to support this survey by our friends at NYU Langone, and Rush University – Care Where it Counts: Understanding the...
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October 20, 2017
My Thoughts on Anomalies
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...
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October 13, 2017
My Life in a Nutshell
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 t...
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September 28, 2017
False alarm and PSP awareness, by John Royer
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 p...
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September 22, 2017
My Feelings on Death, by John Royer
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 1...
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September 15, 2017
VIP Tickets to the Global Citizen Festival
With thanks to Global Citizen, CurePSP has two tickets for sale to the Ultimate VIP section of the Global Citizen Festival, Sept. 23, Great...
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September 15, 2017
RIP John T. Royer
Funny is Good In the midst of winter,I finally learnedthere was in mean invincible summer.Albert Camus We were saddened to learn of the unti...
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August 30, 2017
Speech Therapy after 2nd Stroke
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 a...
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August 16, 2017
My Thoughts About Life And A Friend
John Royer’s latest article takes us through his conversations with a friend and fellow PSP sufferer.By John RoyerIt is July 13, 2017 and a very hot d...
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August 11, 2017
PSP and a Stroke Make Things Interesting
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 wha...
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August 04, 2017
I Had a Major Stroke On Friday
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...
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July 31, 2017
PSP Inspires Prize-Winning Art
Inspired by Her Husband’s PSP, Loudonville Woman Wins Art Award By JIM BREWER, Published in the Times-Gazette, July 28, 2017 LOUDONVILL...
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July 28, 2017
Was it the Anesthesia?
A new article from John Royer, our PSP correspondent, our man on the inside, questioning the causes of PSP. It is June 16, 2017.John Royer...
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July 21, 2017
About my Lola, by Bronte Ficek
In Tagalog, the native language of the Philippines, Lola means grandmother. My Lola, Mercy Lotilla Asencio (pictured), lived in General Santos Ci...
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July 20, 2017
Brain Food: Diet and Brain Health
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 rev...
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