Vigil Neuro Expands VGL101 Phase 1 Trial to Australia
Vigil Neuroscience Expands VGL101 Phase 1 Trial to Australia - Received approval from the Human Research Ethics Committee in Australia...
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Join the ALSP registry
During the month of June, Alzheimer’s and Brain Awareness month, contribute to furthering ALSP understanding and research by donating to...
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Sisters’ Hope Foundation added to NIH – GARD
Sisters' Hope Foundation has been added to the NIH - Genetic and Rare Diseases Information Center under the disease name...
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1st White Matter Rounds Symposium & Round Table
Please join us for the 1st White Matter Rounds Symposium and Round Table on Tuesday, June 7, 2022. The purpose...
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The ALSP Patient Registry is LIVE in the US, UK, Netherlands & Germany
ALSP Patient Registry: The ALSP Registry is now live in the US, UK, Netherlands, and Germany. If you are affected...
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Natural History Study UPDATED locations including Netherlands & UK
The Vigil Neuroscience ALSP Natural History Study is now available and enrolling patients with the CSF1R gene mutation and a...
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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...
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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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Patient Registry App
The ALSP Registry is live in the US and UK. If you are affected by ALSP or a family member...
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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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Proclamation from the Pennsylvania Governor for ALSP Awareness Month
A proclamation is an official declaration issued by a person of authority to make certain announcements known. We are honored...
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Hospice as a Resource for Patient & Family
Join us to discuss Hospice as a Resource for Patient & Family with Wellspan Hospice. "The Road Less Traveled -...
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Sundowning
I hope you all remembered to change your clocks, spring forward! For many of us this is an exciting time...
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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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March is ALSP Awareness Month
ALSP Awareness Month 2022 is officially underway, and Sisters’ Hope Foundation wants you to help us raise awareness and celebrate this...
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Bridging the Gap in ALSP Awareness
We are counting down to ALSP Awareness Month! The importance of March and why it has been chosen as ALSP...
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