Mama’s Legacy

Categories: News, Support News

This story comes to us from Noha Al-Awadi about her mother and her battle with progressive supranuclear palsy. Tuesday, October 9th, 2018 marked a year of her passing. Mama’s Legacy By Noha Abdulrahim Al-Awadi “What do you mean, ‘progressive’”? That was the only question my mother asked her neurologist at Johns Hopkins Hospital in the summer of …

Read More

Rush University Medical Center Caregiver Study

Categories: News, Research News

Have You Been a Caregiver for Someone with Parkinson’s Disease, PSP, MSA, CBD, or a related disorder? You have learned a lot by caring for your loved one with Parkinson’s Disease (PD), PSP, MSA, CBD, or a related disorder. Would you like to help other caregivers on their journey by sharing your experience? Rush University …

Read More

In Conversation with John Burhoe, Sr.

Categories: Advocacy

On Friday, October 5, CurePSP Board Director Amy Branch sat down with John Burhoe Sr., CurePSP Chair Emeritus, to discuss his thoughts on the progress made in the way we understand PSP. These videos capture that conversation.   Part One   Part Two   Part Three   More CurePSP News Here

FREE Webinar, October 18

Categories: Support News

Caregivers’ Search for Meaning For family and professional caregivers by Janet Edmunson, M.Ed. WHEN: Thursday, October 18, 2018 (The webinar also will be recorded for viewing later) – 7:00 p.m. (Eastern) – 6:00 p.m. (Central) – 5:00 p.m. (Mountain) – 4:00 p.m. (Pacific) HOW LONG: Webinar will be approximately 30-40 minutes in length. REGISTER: by …

Read More

Global Citizen Festival, Ultimate VIP Tickets!

Categories: Support News

Once again, CurePSP has secured four (4) Ultimate VIP tickets to the Global Citizen Festival, in Central Park, New York, September 29. At a retail value of $2,500, these tickets are now up for auction in support of CurePSP’s programs and services. Make a bid – who knows – you could win the best seats …

Read More

Sundaes to Stop PSP raised nearly $9,000 for CurePSP’s programs and services!

Categories: News

Suburban Chicago Support Group’s First Fundraiser A Sweet Success By Kathleen Louden The Glenview, Ill., CurePSP Support Group held our inaugural fundraiser on Aug. 19, an ice cream social called Sundaes to Stop PSP, which increased awareness of progressive supranuclear palsy (PSP) and raised nearly $9,000 for CurePSP’s programs and services. Our 25-year-old group regularly …

Read More

CurePSP is hiring! Join us in the fight!

Categories: Help News, News

Professional Opportunity Vice President – Development and Donor Relations CurePSP is seeking a Vice President – Development and Donor Relations to lead the foundation’s fundraising efforts. This position offers promotion opportunities for those qualified individuals with demonstrated leadership capabilities and proven performance. CurePSP has established strong brand awareness under the umbrella of “prime of life” …

Read More

CurePSP supports four new studies through its Venture Grants program

Categories: News, Research News

Research will study genetic factors and tau-protein pathologies in progressive supranuclear palsy (PSP) NEW YORK–(BUSINESS WIRE)— CurePSP, the foundation for prime of life neurodegeneration, has funded four grants at a total of more than $300,000 to investigators at universities in the U.S. and Germany for innovative studies in progressive supranuclear palsy (PSP). PSP is an …

Read More

Complexities With PSP

Categories: Support News

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 complications that come with PSP, such as aspiration, UTIs, and the swallowing troubles that lead to aspiration, are always discussed with our doctors. However, because we, along with our doctors, …

Read More

Types of Care and Care Facilities

Categories: Support News

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 care facilities for adults with physical impairments or chronic disease. All of the levels discussed are potentially appropriate for people with PSP and related diseases. That said, it is extremely …

Read More

Matching Grant Challenge!

Categories: Support News

Dear Community, The Light of Day Foundation is teaming up with you once again, through the Hope Tour, to fight progressive supranuclear palsy (PSP) and related prime of life brain diseases by matching your gifts! Every dollar you give today up to $50,000 will be generously matched, so that your donation is doubled! $50 becomes …

Read More

New Clinical Trial

Categories: Research News

NEW CLINICAL RESEARCH TRIAL FOR PROGRESSIVE SUPRANUCLEAR PALSY (PSP) IS NOW RECRUITING   Progressive Supranuclear Palsy (PSP) is a neurodegenerative disease. In brain cells affected by PSP, there is an abnormal accumulation of a protein called tau. Tau protein forms “tangles” in the brain cells. It can spread outside the affected brain cell in the …

Read More

Remember Me Dancing

Categories: Advocacy

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; often all she can muster is a wail of lament. I know why she is wailing. It’s this horrible disease, progressive supranuclear palsy. It is killing her, breaking down the …

Read More

CurePSP Receives Two-Year Grant from the Stavros Niarchos Foundation to Support Families with Caregiving Burdens

Categories: Support News

Grants are administered by CurePSP through its Cherie Levien Quality of Life Fund, supported by the Levien family, the Stavros Niarchos Foundation, and other donors. CurePSP has received a two-year grant from the Stavros Niarchos Foundation (SNF) to support the Cherie Levien Quality of Life Fund, established in 2017 in memory of Mrs. Levien by …

Read More

Question and Answer with Ileen McFarland

Categories: Advocacy, Support News, Volunteer

Ileen McFarland, CurePSP Board Member and Dallas support group facilitator, talks to us about her upcoming event, Hope Squared, and about the motivation behind being one of CurePSP’s most active advocates. What is your history with PSP and caregiving? My late husband was diagnosed with Parkinson’s in September of 2006, and PSP in 2007.  After …

Read More

Time To Go

Categories: Advocacy, Support News

This story comes to us from Rio Contrada, a young filmmaker and producer whose father, Fred Contrada, has progressive supranuclear palsy (PSP). Rio is making a short film based on his father; the crowdfunding link to support his project is below.   I was 25 years old when the accident happened. My girlfriend and I …

Read More

CurePSP Teams Up With the Tau Consortium

Categories: Research News

    CurePSP and the Rainwater Charitable Foundation Launch the Prime of Life Brain Initiative The initiative will support neurodegeneration research with goal of finding treatment and cure NEW YORK, April 10, 2018 – CurePSP and the Rainwater Charitable Foundation (RCF) today announced their landmark partnership in the Prime of Life Brain Initiative, an unprecedented …

Read More

Words From a Caregiver in India

Categories: Support News

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. it takes forgiveness, humility, patience, and kindness, and it’s OK if you run out of these things from time to time. Caregiver Breathers, by Niti Vaidya Being a caregiver …

Read More

CurePSP is hiring! Join us in the fight!

Categories: News

  GIFT PROCESSING & DATA QUALITY COORDINATOR Position Location: Lutherville, Maryland To Apply: email your CV and a cover letter outlining how your experience suits this role to: jobs@curepsp.org Position is hourly and nonexempt. CurePSP, Inc. is a nonprofit organization with a mission of creating awareness, care and cure for devastating prime of life neurological …

Read More

Right to Try

Categories: Advocacy, News

Washington, D.C., March 14, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement in regards to last night’s vote in the House of Representatives on the latest version of the Right to Try Act: “Yesterday evening, the House of …

Read More

An Opportunity to Share Your Experience

Categories: Research News

We have been informed of a research project by a company wishing to learn, in detail, the patient and carepartner journey. This information will inform potential drug developers’ clinical trial operations and processes, to make clinical trial attendance as suitable as possible to the patient and carepartner. The interview, among other things, will cover a …

Read More

Navigating Veterans’ Affairs for PSP Sufferers

Categories: Advocacy, Support News

One Family’s Struggle Inspires Them to Help Others This article appears in our Spring 2018 Newsletter. From 1967 to 1971, Thyra Burakowski’s husband, Anthony (Tony), worked for the United States Navy, and was in Vietnam from 1968 to 1969. “I cannot tell you much about Vietnam because Tony did not speak about it at all,” …

Read More

NORD to Collaborate with FDA on Pilot Patient Engagement Activity

Categories: Advocacy

Posted by Christina Jensen, National Organization for Rare Disorders website, February 28, 2018   Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced a collaboration with the Food and Drug Administration (FDA) on a pilot project that would …

Read More

10 Documents Every Caregiver Needs

Categories: Support News

Article by Lori Thomas, February 27, 2018, SeniorAdvice.com Being a caregiver can sometimes be an overwhelming responsibility. Whether you are caring for a parent, a loved one, a friend or even an acquaintance—this role requires a great deal of time and commitment. Caregivers not only need to provide daily support for those they look after, …

Read More

Currently Funded Research – CurePSP

Categories: Research News

Developing Treatments for Swallowing and Communication Deficits in PSP Dr. Michelle S. Troche, Columbia University CurePSP is very excited to fund Dr. Troche’s research in an often overlooked area of care for PSP patients: swallowing and communication. Results of this study could have direct implications on how PSP patients are treated to improve their swallowing …

Read More

Simple Walking Test May Help Make Difficult Diagnosis

Categories: Research News

AMERICAN ACADEMY OF NEUROLOGY\ PUBLIC RELEASE: 21-FEB-2018 MINNEAPOLIS – There’s a cause of dementia that can sometimes be reversed, but it’s often not diagnosed because the symptoms are so similar to those of other disorders. Now researchers say a simple walking test may be able to accurately diagnose the disease, according to a study published the …

Read More

NORD Statement Regarding State Proposals to Alter Their Medicaid Program

Categories: Advocacy, Support News

Posted by Laura Mullen Washington, D.C., February 8, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding recent state proposals to alter their Medicaid program by utilizing the federal 1115 Waiver process: “In an attempt to control health care …

Read More

Caregiver Stress and Burnout 

Categories: Support News

Tips for Regaining Your Energy, Optimism, and Hope  an excerpt from the 2018 CurePSP Guidebook The demands of caregiving can be overwhelming, especially if you feel you have little control over the situation or you’re in over your head. If the stress of caregiving is left unchecked, it can take a toll on your health, relationships, …

Read More

A Free Webinar, by Janet Edmunson

Categories: Support News

Minimizing Caregiver Fatigue by Janet Edmunson, M.Ed. For family and professional caregivers Tuesday, March 6, 2018 (The webinar also will be recorded for viewing later) 7:00 p.m. (Eastern) 6:00 p.m. (Central) 5:00 p.m. (Mountain) 4:00 p.m. (Pacific) Webinar will be approximately 30-40 minutes in length. Register online today by clicking the link below. Or paste …

Read More

Launching the New Forum!

Categories: Uncategorized

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 was a well used and much loved space for many people to reach out and connect with others going through the same journey, sharing ideas, thoughts, and words …

Read More

New Sleep Pattern Clinical Trial for PSP Patients

Categories: Research News

Study Currently Not Recruiting For more information, contact Dr. Christine Walsh at Christine.Walsh@ucsf.edu About the Study The goal of this study is to improve the quality of life of individuals with PSP by improving their sleep through a remote trial process. Research shows that individuals with PSP often have profound sleep disruption. Not only were these …

Read More

Tau Pipeline Enabling Program (T-PEP)

Categories: Research News

The Rainwater Foundation is proud to announce that the Tau Consortium has just launched a new matching grant program with The Alzheimer’s Association. It’s called the Tau Pipeline Enabling Program (T-PEP), and its goals is to accelerate the discovery of potential new therapies for tauopathies, including Alzheimer’s (AD), Frontotemporal Dementia (FTD), and Progressive Supranuclear Palsy …

Read More

CurePSP Forum To Be Replaced

Categories: Support News

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 …

Read More

Response to Senate Vote on the Orphan Drug Tax Credit

Categories: News

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 …

Read More

Holiday Hints For Caregivers

Categories: Support News

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 …

Read More

The Monster Corralled

Categories: Support News

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 …

Read More

CurePSP Support Group Initiative Goes Global This Giving Tuesday.

Categories: Uncategorized

This press release was published at 10am Wednesday, November 15, in PR Newswire.   NEW YORK, Nov. 15, 2017 /PRNewswire/ — CurePSP, the leading nonprofit advocacy organization for prime of life neurodegenerative diseases, today announced the launch of a global initiative tied to Giving Tuesday, #PiesforPSP, to support individuals and families who have been affected by …

Read More

Make Meaning to Stay Positive

Categories: Support News

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 …

Read More

A Mother’s Hands

Categories: Support News

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 …

Read More

The Crippled Trio

Categories: Support News

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 …

Read More

Announcement regarding a recent press release from Dthera Sciences

Categories: Research News

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 …

Read More

Care Where It Counts: Understanding the Needs of People with PSP and Related Disorders

Categories: Research News

      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 …

Read More

My Thoughts on Anomalies

Categories: Support News

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 …

Read More

My Life in a Nutshell

Categories: Support News

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 …

Read More

False alarm and PSP awareness, by John Royer

Categories: Support News

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 …

Read More

My Feelings on Death, by John Royer

Categories: Support News

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 …

Read More

VIP Tickets to the Global Citizen Festival

Categories: News

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 …

Read More

RIP John T. Royer

Categories: Support News

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, …

Read More