Find Your Voice
Impactful stories from the ALSP community.
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![A promotional graphic for the Sisters' Hope Foundation featuring a woman with short gray hair wearing a floral and lace top, with text that reads 'Community Stories, Find Your Voice' and a pink and purple color scheme.]()
Janie's ALSP Story
APRIL 22ND, 2024
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![A promotional image for Sister's Hope Foundation featuring two smiling women, one young and one elderly, against a purple background with text promoting community stories and fundraising.]()
Lisa's ALSP Story
DECEMBER 7TH, 2023
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![Book cover for "In Sickness: Men and the Culture of Caregiving" by Bob Coughlin and Paul Kidwell, featuring an illustration of two hands reaching out and holding each other's fingers.]()
In Sickness Podcast
WITH HEIDI EDWARDS & MASON SMITH
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![Logo with a microphone design featuring a heart pattern, and text reading 'Conversations of the Heart' and 'Prescriptions for Healing'.]()
Conversations of the Heart Podcast
MARY AND LISA ON ALSP
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![Illustration of various tools for mental health, with a red toolbox labeled 'Mental Health Toolbox']()
Mental Health Toolbox Podcast
WITH HEIDI EDWARDS
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![Logo for OnMedicalGrounds with the letters OMG, a DNA strand, and a red medical cup with a white cross.]()
On Medical Grounds Podcast
A RARE DISEASE IDENTIFIED AND A SISTER’S HOPE
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![Cover image for the book or podcast titled "The Story Behind Her Success" featuring Candy O'Terry, a woman with blonde hair wearing a blue dress, sitting on a grey sofa, smiling, with text and a logo on the left side.]()
The Story Behind Her Success Podcast
WITH HEIDI EDWARDS
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![Heidi Edwards sitting on a couch, speaking, with an abstract blue and gray painting hanging on the wall behind her. She is wearing a pastel-colored blouse and a necklace, and has a microphone attached to her top.]()
Misdiagnosed: 3 Families Unite
A JOURNEY FOR AWARENESS & CURE
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![Pre-press page of a journal article titled "Up Close and Personal with Adult-Onset Leukoencephalopathy" published in the Journal of Alzheimer's Disease, 2024, with keywords related to neurodegenerative disorders and genetic mutations.]()
Up Close and Personal
WITH ADULT ONSET LEUKOENCEPHALOPATHY
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![Slide honoring Heidi Edwards with her black-and-white portrait, surrounded by purple butterfly illustrations and sparkles, with text indicating she is part of the Sisters Hope Foundation supporting ALSP disease.]()
#OnceUponAGene Podcast
WITH HEIDI EDWARDS
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![A woman in a pink top standing next to a purple sign that reads 'Dementia and the Solar Eclipse: What You Need To Know,' featuring the Sister's Hope Foundation logo.]()
Dementia & The Solar Eclipse
WHAT YOU NEED TO KNOW
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![Text on a white background that reads 'A journey to genetic testing the results' in bold black letters.]()
A Journey to Genetic Testing
PART 3
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![A white box labeled 'Clinical Testing Collection Kit' with hexagonal patterns, resting on a dark surface, held by a person with light skin and short nails.]()
A Journey to Genetic Testing
PART 2
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![Two women smiling, one wearing glasses and a blue floral top, the other with long brown hair and a dark top, standing outdoors with greenery in the background, next to a blue banner with white text that says "A Journey to Genetic Testing."]()
A Journey to Genetic Testing
PART 1
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![Memorial image for Cacie Finley with her name and dates, May 22, 1984 - January 24, 2023, on a pink background.]()
Cacie Finley
MAY 22, 1984-JANUARY 24, 2023
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![Two women are seated on a red couch during a TV interview, with a cityscape visible through large windows behind them. One woman wears a dark ruffled top with a pink ribbon pin, and the other wears an orange blouse. A banner at the bottom displays information about the Porterville Fair on Saturday, September 17th.]()
Raising Awareness for ALSP
WITH JANIE & KIM
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![Row of bright yellow sunflowers with dark brown centers.]()
Betty Ramsey
JUNE 24, 1959-AUGUST 25, 2022
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![Close-up of blooming lavender flowers in a garden]()
ALSP Community Mourns the Loss
OF MARK EDWARD POIRIER
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![The image contains text that reads, 'Life changes in the blink of an eye' on a blue background.]()
Life Changes
IN THE BLINK OF AN EYE
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![Black and white photo of an elderly man and woman, possibly a couple, in a home setting with a banner below that reads "My Husband's Journey."]()
My Husband's Journey
WITH ALSP
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![Book cover titled "The Decision of My Life" with a pink background, featuring two photos of a blonde woman with children, one of her with an older girl and the other with a young girl in a yellow dress.]()
The Decision of my Life
TO TEST OR NOT TO TEST
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![A young man and woman hugging each other tightly outdoors during the daytime with a crowd in the background, overlaid with the text 'Love, Loss and The Power of Knowledge'.]()
Love, Loss & The Power of Knowledge
MASON’S STORY
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![Close-up of a purple flower with orange and purple center.]()
My CSF1R Story
HOPE FROM A CARRIER
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![Close-up of pink tulips in a garden with green leaves and blurred flowers in the background.]()
A Journey Too Young
NICOLE’S STORY
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![A woman wearing a blue cap with 'Balenciaga' written on it, smiling outdoors in front of a landscape with fields and trees, wearing a beige and navy jacket and a light blue turtleneck.]()
A World Apart
BROUGHT TOGETHER FOR ONE CAUSE
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![A bouquet of purple tulips with green leaves, tied with a purple ribbon in a clear glass vase, next to a purple background with white and purple text that reads 'When Caregiving Becomes Personal'.]()
When Caregiving Becomes Personal
A MOTHER’S STORY
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![A man and a woman sitting together indoors, smiling and holding drinks. The man has a beard and is wearing a cap and a black hoodie, while the woman has short dark hair and is wearing a red sweater. They appear happy and friendly.]()
Jeff's Journey
KIM’S VOICE
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![Cover of a story titled 'Being Holly: A Caregiver's Story' with a woman and a young man smiling and hugging inside a house.]()
Being Holly
A CAREGIVER STORY
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![Three women standing outdoors, wearing sunglasses, smiling, with cloudy sky in the background.]()
A Sister's Hope
THE STORY BEHIND SISTERS’ HOPE FOUNDATION
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![A family of six, including three young children with red hair, sitting outdoors on grass during daytime. The children are engaging with an adult woman with long dark hair, who is holding one of them. An older man with glasses, wearing a baseball cap, is in the background. There is a photo of a young man with dark hair on a piece of paper, wearing a gray T-shirt with a blue ribbon and text. Text on the image reads "Josh - ALSP Story & Fundraiser."]()
Josh
ALSP STORY & FUNDRAISER
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![A woman sitting on grass near flowerbeds with red flowers, wearing sunglasses and casual clothing, smiling at the camera. Next to her is a green background with red text that reads 'KIM'S ALSP Story'.]()
Kim's ALSP Story
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![Black-and-white portrait of a smiling woman with shoulder-length hair, next to a pink background with white cursive text that reads 'Heidi Edwards' Story'.]()
Heidi Edward's Story
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![A young woman with long brown hair and a black top, looking at the camera, sitting indoors near large windows with a landscape view, surrounded by a purple background with text that says 'Community Stories', 'Find Your Voice', and a logo for Sister's Hope Foundation.]()
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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![Open books with one open book standing upright on a green background, accompanied by a purple rectangle on the left with a white icon of books and a graduation cap, and text that reads "2024 The Year of Education."]()
2024
THE YEAR OF EDUCATION
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![Word 'ADVOCATE' spelled out with letter blocks and the word 'CAREGIVER as Advocate' on a purple banner.]()
Caregiver
AS ADVOCATE
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![Whiteboard with a large red sign reading 'Family Calendar' surrounded by colorful sticky notes, schedules, and a bulletin board with a checklist and notes. An arm with a green leaf partially obscures the left side of the image.]()
Caregiver
AS ACTIVITIES DIRECTOR
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![A frying pan with chicken and vegetables on a stovetop, surrounded by various bowls of chopped ingredients and herbs, with a purple banner on the left labeled 'Caregiver as Chef'.]()
Caregiver
AS CHEF
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![Halloween-themed image featuring a ceramic jack-o'-lantern with a witch hat, lit from within, next to a lit candle on a reflective surface with bokeh lights in the background. Text reads "A Happy Halloween Memory" with a pumpkin icon.]()
A Happy
HALLOWEEN MEMORY
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![Colorful arrows pointing in various directions surrounded by the words 'who', 'what', 'when', 'where', 'why', and 'how' on a black background. Overlay text reads 'Executive Dysfunction in ALSP' on a purple banner with a head and brain icon.]()
Executive Dysfunction
IN ALSP
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![Illustration of a paper cutout in the shape of a human head with a purple electroencephalogram (EEG) line pattern across it, held by multiple hands, with a purple background and a white icon of a brain with a lightning bolt.]()
Seizures
IN ALSP PATIENTS
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![A digital graphic with the Cure Leukemia logo featuring a stylized DNA strand. To the left, a purple section contains white text that reads, 'SHOW UP! SPEAK UP! Connecting in the Leukodystrophy Community.']()
Show Up! Speak Up!
CONNECTING IN THE LEUKODYSTROPHY COMMUNITY
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![Illustration of a woman’s journey through genetics, featuring a glowing representation of chromosomes and DNA with purple and pink hues.]()
BANDDOS
ONE WOMAN’S JOURNEY
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![Family photo of a man, woman, and two young boys, one holding a framed picture of a child's face, with purple and white graphic design elements, including a heart and the text 'Krabbe Leukodystrophy Dawson's Story'.]()
Krabbe Leukodystrophy
DAWSON’S STORY
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![A group of five people, including children and adults, gathered in a festive setting decorated with balloons, streamers, and a Kansas City Chiefs banner. They are celebrating Leukencephalopathy with Calcifications & Cysts (LCC). One girl is in a wheelchair holding a trophy, and one man is holding a decorated frame for photos.]()
LCC
THE DIKE FAMILY
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![A colorful sunset sky with pink, purple, and orange clouds, part of a memorial tribute for Heather with a graphic heart with wings and the text "REMEMBERING Heather."]()
Remembering Heather
FOUR YEARS LATER
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![A barren tree against a cloudy gray sky, with a purple banner on the left side showing a broken heart icon and the text 'Grief at Two Years'.]()
Grief
AT TWO YEARS
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![Medical form on a clipboard with a pen and stethoscope placed on top.]()
Advanced Directives
A PERSONAL PERSPECTIVE
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![A person signing a document titled "Last Will and Testament" with glasses and a pen on a table.]()
August
IS MAKE A WILL MONTH
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![Open book, pen, and various textbooks on a desk related to natural history studies.]()
The Importance of
NATURAL HISTORY STUDIES
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![A young boy with a backpack entering a yellow school bus during late afternoon or early evening sunlight.]()
Navigating
SCHOOL AND ALSP
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![Three people holding hands on a wooden surface, with text that says "You Are Not ALONE" and an icon of three figures on the left.]()
You Are Not
ALONE
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![A purple and pink bokeh background with a rain cloud icon and the text "GRIEF is Like Glitter" and the phrase "Like Glitter" underneath.]()
Grief
IS LIKE GLITTER
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![A medical record with a stethoscope, pen, reading glasses, and a notepad on a white surface, with added purple graphic overlay containing the text "Misdiagnosed: The ALSP Mystery" and a lightbulb icon with a question mark inside.]()
Misdiagnosed
THE ALSP MYSTERY
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![A glass of water splashing with water flowing around it, emphasizing hydration importance.]()
Safety Month
THE IMPORTANCE OF HYDRATION
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![A torn piece of paper with the words "Emergency Information" on it, set against a beige background. On the left side, there is a pink section with a white icon of a telephone and a medical cross, and the words "EMERGENCY Information" in white and black text.]()
Safety Month
EMERGENCY INFORMATION
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![A red first aid kit with a white cross and the words "FIRST AID" on it, a pair of green scissors, a bandage, and a rolled gauze on a wooden surface with a wood-paneled background, with a purple banner on the left side that says "OUCH! First Aid Kit."]()
Safety Month
BUILDING A FIRST AID KIT
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![The image shows the word safety spelled out with letter tiles, along with three keys, on a white surface. It is themed around home safety and security.]()
Safety Month
HOME SAFETY & SECURITY
