Stories


Betty Ramsey (June 24, 1959 – August 25, 2022)

It is with a heavy heart we share the passing of another ALSP patient. Betty passed away on August 25, 2022. In the words of […]

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American Brain Foundation – ALSP Article

Kim has been a huge advocate for ALSP and Sisters’ Hope Foundation. This article is a true representation of Kim’s dedication to her family and […]

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Life Changes in the Blink of an Eye

You never know how much you have until suddenly you don’t. In other words, we take things for granted all the time. Nothing prepares you […]

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My husband’s journey

Daniel and I married in 2006.  At the time he told me that he had family members who had been diagnosed with Pick’s disease which […]

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The Decision of my Life

The Decision of My Life. To Test or Not to Test. When you have a rare genetic disease in your family that is hereditary, without […]

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Love, Loss and the Power of Knowledge

One of the realities of growing up and becoming an adult is the day when children are faced with the need of their parent who […]

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My CSF1R Story – Hope from a Carrier

My story begins with my younger brother’s diagnosis of HDLS/ALSP when he was 54. His most noticeable symptom was seizures. Family that lived nearby eventually […]

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A Journey Too Young

Let me start by saying, “I’ve been in healthcare, specifically a caregiver for over 20 years.” I have had the privilege of holding many hands […]

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A World Apart…Brought Together for One Cause

Yinan’s Personal Story: “The reason why I started the care center is that my stepfather, who was an orthopedist, was diagnosed with HDLS/ALSP. He is […]

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When Caregiving Becomes Personal

For more than 30 years I practiced medicine as a general practice physician. During this time, I met with and cared for patients of all […]

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