Please join Sisters’ Hope Foundation in welcoming our newest Board Members
Erin Sullivan Erin will be leading the Patient & Caregiver Support Group meetings beginning in 2023. Erin has been an...
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EndALSP Fundraiser was a huge success!
Featured in THE PORTERVILLE RECORDER ALSP fundraiser raises more than $20,000 More than 200 people attended the End ALSP...
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Raising Awareness for ALSP
https://youtu.be/hsRlTwUJlRo Thank you to Kim and Janie for raising awareness and hosting the END ALSP Fundraiser in Porterville, CA...
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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,...
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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...
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VGL101 Granted Orphan Drug Designation
Exciting news for ALSP patients! VGL101 received U.S. Food and Drug Administration (FDA) orphan drug designation: In July, the FDA granted...
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ALSP Community mourns the loss
It is with a heavy heart that we share the passing of an ALSP family member. Mark lost his battle...
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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...
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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...
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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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Pennsylvania Governor Proclamation 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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