ALSP News

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)

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

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

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

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

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

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 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

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 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

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

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

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

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

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 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

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

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

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

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

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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