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 …

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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 …

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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 …

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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 …

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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,” …

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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 …

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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 …

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