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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Anti-Tau Antibody Trial Enters Phase 2!

Categories: Uncategorized

AbbVie Initiates Phase 2 Clinical Trial Programs for ABBV-8E12, an Investigational Anti-Tau Antibody, in Early Alzheimer’s Disease and Progressive Supranuclear Palsy Jan 25, 2017 Courtesy of AbbVie, January 2017   – Initiation of Phase 2 clinical trial programs in early Alzheimer’s disease and progressive supranuclear palsy (PSP) is part of ongoing commitment to investigate ABBV-8E12 …

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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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First time fundraisers raise over $32,000!

Categories: Volunteer

Wine in the Hill Country We wish to congratulate Kary Cataldi for a hugely successful wine tasting event in Honor of Mark Witt on Saturday, October 8, at the Weingarten in the celebrated Pontotoc Vineyard, Texas. The day included not just beautifully crafted American wines with perfectly paired food, but also live music and a silent …

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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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