Latest News from The Foundation

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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July 18, 2017

Other-World Imaginings, by John Royer

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...

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July 14, 2017

A Good Mind In A Useless Body.

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’v...

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July 14, 2017

Presenting at the Addison Rotary Club, Dallas

John Burhoe Sr., Chair Emeritus of CurePSP, presenting to the Addison Rotary Club, DallasOn Friday, April 7, CurePSP Chair Emeritus and long-time neur...

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July 07, 2017

Anti-Tau Drugs for PSP Move into Phase II

This article first appeared in MedPage Today (http://www.medpagetoday.com/meetingcoverage/mds/65883)by Kristina Fiore, Deputy Managing Edito...

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July 06, 2017

Open Heart Surgery, by John Royer

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 c...

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July 06, 2017

Three Urso Student Summer Fellowship Grants Awarded

The Urso Summer Student Program in PSP Research supports students conducting summer research projects focused on progressive supranuclear palsy. This...

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July 06, 2017

CurePSP-Affiliated Study Needs you!

Care Where It Counts: Understanding the Needs of People with PSP and Related DisordersGoals: People with Progressive Supranuclear Palsy and...

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July 05, 2017

A Hospital Stay, by John Royer

In his 9th article, John Royer remembers a hospital visit where he discovered he had unknowingly suffered a stroke months prior.  There is a...

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July 03, 2017

Square patches of light remember you

This beautiful poem, by Bronte Nicole Ficek, originally published in Neurology, June 2017, is a tribute to her grandmother, Mercy...

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June 12, 2017

A New Understanding of How Our Brains Work

Blue Brain Team Discovers a Multi-Dimensional Universe in Brain NetworksSource: NEUROSCIENCE NEWS, JUNE 12, 2017This article, appearing in N...

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June 03, 2017

Coffee and Breakfast, by John Royer

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 was...

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June 02, 2017

Update from John Royer, PSP Correspondent

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 abou...

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June 01, 2017

Light Of Day Grant CurePSP $80,000

David Kemp, CurePSP President, with Tony Pallagrosi, Light of Day Executive Director, presenting the matching grant.Early in 2017, Tony Pallagrosi con...

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May 31, 2017

Update from John Royer, PSP Correspondent

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 onc...

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May 25, 2017

New Criteria For PSP Diagnosis

New Diagnosis Criteria Established for PSP.In a groundbreaking development, an international collaboration of neurologists and movement disorder speci...

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May 23, 2017

Update from John Royer, PSP Correspondent

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...

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May 05, 2017

Update from John Royer, PSP Correspondent

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 Ma...

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May 02, 2017

CurePSP Venture Grant Goes to Dr. John Steele.

Dr. John SteeleDr. John W. Steele has been awarded a CurePSP Venture Grant for a study titled “iCRISPRi in Human neurons and Glia to Elucidate Selecti...

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May 02, 2017

Dr Troche Awarded a CurePSP Venture Grant

Dr. Michelle TrocheMichelle S. Troche, PhD/CCC-SLP, has been awarded a CurePSP Venture Grant for her research project titled “Developing Treatmen...

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April 24, 2017

John Royer, thoughts of a PSP patient

This is the third installment from John Royer, our correspondent with PSP. See his first article here.See his second article here.  You...

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April 14, 2017

An Update From John, a PSP patient.

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 mor...

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April 06, 2017

A message from John, who has PSP.

 This beautiful article was sent to us by one of our community, John Royer, who has PSP. Thank you John, for sharing these words.  Auth...

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April 04, 2017

Why Advocacy is Vital

Trish Caruana, Vice President – Patient and Carepartner AdvocacyIn this article, Trish Caruana, Vice President – Patient and Carepartner Adv...

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March 23, 2017

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

  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 m...

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January 27, 2017

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

     With $100 million from Rainwater family, brain research hits strideBY STEVE KASKOVICH, Star-Telegram, January 26More tha...

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January 26, 2017

Anti-Tau Antibody Trial Enters Phase 2!

AbbVie Initiates Phase 2 Clinical Trial Programs for ABBV-8E12, an Investigational Anti-Tau Antibody, in Early Alzheimer’s Disease and Progressive Sup...

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