Find Your Voice
Impactful stories from the ALSP community.
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Janie's ALSP Story
APRIL 22ND, 2024
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Lisa's ALSP Story
DECEMBER 7TH, 2023
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In Sickness Podcast
WITH HEIDI EDWARDS & MASON SMITH
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Conversations of the Heart Podcast
MARY AND LISA ON ALSP
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Mental Health Toolbox Podcast
WITH HEIDI EDWARDS
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On Medical Grounds Podcast
A RARE DISEASE IDENTIFIED AND A SISTER’S HOPE
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The Story Behind Her Success Podcast
WITH HEIDI EDWARDS
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Misdiagnosed: 3 Families Unite
A JOURNEY FOR AWARENESS & CURE
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Up Close and Personal
WITH ADULT ONSET LEUKOENCEPHALOPATHY
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#OnceUponAGene Podcast
WITH HEIDI EDWARDS
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Dementia & The Solar Eclipse
WHAT YOU NEED TO KNOW
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A Journey to Genetic Testing
PART 3
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A Journey to Genetic Testing
PART 2
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A Journey to Genetic Testing
PART 1
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Cacie Finley
MAY 22, 1984-JANUARY 24, 2023
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Raising Awareness for ALSP
WITH JANIE & KIM
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Betty Ramsey
JUNE 24, 1959-AUGUST 25, 2022
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ALSP Community Mourns the Loss
OF MARK EDWARD POIRIER
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Life Changes
IN THE BLINK OF AN EYE
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My Husband's Journey
WITH ALSP
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The Decision of my Life
TO TEST OR NOT TO TEST
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Love, Loss & The Power of Knowledge
MASON’S STORY
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My CSF1R Story
HOPE FROM A CARRIER
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A Journey Too Young
NICOLE’S STORY
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A World Apart
BROUGHT TOGETHER FOR ONE CAUSE
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When Caregiving Becomes Personal
A MOTHER’S STORY
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Jeff's Journey
KIM’S VOICE
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Being Holly
A CAREGIVER STORY
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A Sister's Hope
THE STORY BEHIND SISTERS’ HOPE FOUNDATION
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Josh
ALSP STORY & FUNDRAISER
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Kim's ALSP Story
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Heidi Edward's Story
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Madi's Journey: Losing Her Mom to ALSP and Fighting for a Cure
Madi Boyer, Heidi's niece, lost her mom to ALSP in 2020. She shares a piece of her story in this poignant video, developed with support from Vigil Neuroscience.
Blog Articles
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2024
THE YEAR OF EDUCATION
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Caregiver
AS ADVOCATE
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Caregiver
AS ACTIVITIES DIRECTOR
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Caregiver
AS CHEF
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A Happy
HALLOWEEN MEMORY
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Executive Dysfunction
IN ALSP
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Seizures
IN ALSP PATIENTS
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Show Up! Speak Up!
CONNECTING IN THE LEUKODYSTROPHY COMMUNITY
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BANDDOS
ONE WOMAN’S JOURNEY
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Krabbe Leukodystrophy
DAWSON’S STORY
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LCC
THE DIKE FAMILY
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Remembering Heather
FOUR YEARS LATER
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Grief
AT TWO YEARS
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Advanced Directives
A PERSONAL PERSPECTIVE
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August
IS MAKE A WILL MONTH
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The Importance of
NATURAL HISTORY STUDIES
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Navigating
SCHOOL AND ALSP
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You Are Not
ALONE
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Grief
IS LIKE GLITTER
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Misdiagnosed
THE ALSP MYSTERY
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Safety Month
THE IMPORTANCE OF HYDRATION
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Safety Month
EMERGENCY INFORMATION
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Safety Month
BUILDING A FIRST AID KIT
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Safety Month
HOME SAFETY & SECURITY
