Patient, Family & Caregiver Stories

A Journey to Genetic Testing – The Results

“Your test is negative.”... Hearing these words, my husband and I just clung to each other and cried. There are...

A Journey to Genetic Testing – Part 2

On an early morning, with sleep in my eyes and coffee in hand, I answered the phone prepared for an...

A Journey to Genetic Testing

by Erin Sullivan I often ask myself, “How did I get here?” No one anticipates having a familial genetic mutation...

“Find Your Voice”

It's "Find Your Voice" Friday! Last year was hard on me for various reasons but one day I decided I...

Cacie Finley (May 22, 1984 – January 24, 2023)

The ALSP Community has lost a beautiful woman, Cacie was known in our small community from the day she connected...

Phase 1 Clinical Trial Evaluating VGL101

When you start a non-profit to save your family from a devastating neurodegenerative disease, it is really difficult to “take...

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,...

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...

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...

My husband’s journey

Daniel and I married in 2006. At the time he told me that he had family members who had been...

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...

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...

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....

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...

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...

When Caregiving Becomes Personal

For more than 30 years I practiced medicine as a general practice physician. During this time, I met with and...

Jeff’s Journey: Kim’s Voice

Thanksgiving week, 2018, I went on a hike with my wife and my brother, Jeff. After a mile of walking,...

Being Holly: A Caregiver Story

Being Holly’s Caregiver: My Life Caring for an ALSP Patient My name is April Aurentz and I am the office...

A Sister’s Hope: the Story Behind Sisters’ Hope Foundation

I’m Heidi Edwards, President and Founder of Sisters' Hope Foundation, a non-profit organization supporting those affected by adult-onset leukoencephalopathy with...

Mayo Clinic, Florida

February 15, 2022, did not start out as every other day. I had flown to Jacksonville, Florida the day prior...

Josh – ALSP Story & Fundraiser

Josh's Story and T-shirt Fundraiser: If you are interested in a shirt, the orders need to be placed and...

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