News & Annual Reports

Heidi Edwards Featured on People and Perspectives Radio Program

Heidi Edwards Featured on People and Perspectives Radio Program

THE CENTRAL PA PEOPLE AND PERSPECTIVES PODCAST features Jenna Clay and Christine Ricci who each week discuss a topic that...
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Conference hosted by UCI and sponsored by CIRM

Conference hosted by UCI and sponsored by CIRM

March 25-27, 2023, over 60 doctors, researchers, ALSP patients and caregivers gathered at the University of California, Irvine to partner...
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The 1st Global ALSP Medical & Scientific Advisory Council

The 1st Global ALSP Medical & Scientific Advisory Council

Sisters’ Hope Foundation is excited to launch the 1st Global ALSP Medical & Scientific Advisory Council. The SHF Medical & Scientific...
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ALSP Aware Program from Vigil Neuroscience

ALSP Aware Program from Vigil Neuroscience

Since Vigil Neuroscience was founded in 2020, our team has been dedicated to developing a treatment for ALSP. We are...
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Bridge Lighting Schedule

Bridge Lighting Schedule

ALSP Awareness Month 2023  Bridge Lighting Pictures and Schedule "My goal in 2022 was for just one person to see...
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American Brain Foundation

American Brain Foundation

Thanks to the hard work and dedication of our Board Member, Kim Cade, ALSP has been added to the Diseases...
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“Find Your Voice”

“Find Your Voice”

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

ALSP Community Webinar

Vigil Neuroscience recently organized and sponsored a webinar pulling together advocacy and research for the ALSP community. Vigil is dedicated...
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Cacie Finley (May 22, 1984 – January 24, 2023)

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...
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Phase 1 Clinical Trial Evaluating VGL101

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...
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Please join Sisters’ Hope Foundation in welcoming our newest Board Members

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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Virtual Walk/Run for a Cure 2022

Virtual Walk/Run for a Cure 2022

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EndALSP Fundraiser was a huge success!

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

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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