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...
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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...
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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....
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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...
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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...
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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...
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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,...
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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...
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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...
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Mayo Clinic, Florida
February 15, 2022, did not start out as every other day. I had flown to Jacksonville, Florida the day prior...
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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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Kim’s ALSP Story
“In July, I had a genetics test done to see if I carry the CSF1R gene variant the same variant...
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Heidi Edwards’ Story
I’m Heidi Edwards, President and founder of Sisters Hope Foundation, a non-profit organization supporting families struggling with Hereditary Diffuse leukodystrophy...
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Tell Us Your Story
ALSP Patients and Caregivers, we want to hear from you. Complete the form below to tell us your story.