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...
Read More
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...
Read More
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,...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
My husband’s journey
Daniel and I married in 2006. At the time he told me that he had family members who had been...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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...
Read More
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....
Read More
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...
Read More
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...
Read More
Patient Registry App
The ALSP Registry is live in the US and UK. If you are affected by ALSP or a family member...
Read More
When Caregiving Becomes Personal
For more than 30 years I practiced medicine as a general practice physician. During this time, I met with and...
Read More
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...
Read More
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 -...
Read More
Sundowning
I hope you all remembered to change your clocks, spring forward! For many of us this is an exciting time...
Read More