Sisters' Hope Foundation

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Sisters' Hope Foundation

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Sisters' Hope Foundation (Cure ALSP) is dedicated to providing support and awareness, amplifying patient voices, and one day meeting the first survivor of ALSP. The mission of Sisters' Hope Foundation is to support and empower families impacted by CSF1R-ALSP and related brain diseases by:
*educating the public to increase awareness around this rare disease
*advocating for further research and fund

ing to improve treatment options
*connecting patients and families with this diagnosis to build community and support
*providing financial assistance and resources to those in need

08/13/2026

We are incredibly honored to share that our very own, Heidi Edwards, President & Founder, has been chosen as a Rare Disease Difference Maker by Engage Health. 💜

Being named as a Rare Disease Difference Maker is an incredible honor and there is no doubt that this recognition is well deserved.

Read the Rare Disease Difference Maker story from Engage Health:
https://www.engagehealth.com/rare-disease-difference-maker/heidi-edwards/

08/12/2026

When Hope Changes…

08/01/2026

Sisters' Hope Foundation is on a mission to save lives and that takes research and funding so we are hosting a Pampered Chef fundraiser!

The fundraiser will take place in-person and online.

If you are local to Melbourne, FL please join us on Wednesday, August 5 from 4pm - 6pm at the Carriage House located at Lamplighter Village - 55+ Community - Melbourne, FL, 500 Lantern Drive Melbourne, FL 32934.

For those not in close proximity or not available on August 5, please shop online from August 1 - August 7.

Shop Here:
https://www.pamperedchef.com/party/heidi7030?fbclid=IwY2xjawTV9V1leHRuA2FlbQIxMABicmlkETFDY0FZU29YTmlSMGlHVVZGc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHuGxv6qV3wNm-8w997TwDsu-e8YjLl2yp6QMlaYiwMwPxrlQvbuPPeG34x8s_aem_DfySTkjg1ZqUmn4myVM3IQ

Invite your friends to join us!

07/28/2026

A major step forward for ALSP research.

The newly published ILLUMINATE Natural History Study is the first prospective study to follow people living with CSF1R-ALSP over time.

Researchers found that:
🧠 MRI changes closely track disease progression.
🩸 Blood biomarkers like neurofilament light (NfL) and GFAP reflect ongoing brain injury.
📋 Cognitive and functional assessments, including the MoCA and Cortical Basal Ganglia Functional Scale, may help measure disease progression in future clinical trials.

While this study does not provide a treatment, it gives researchers a roadmap for designing better clinical trials and measuring whether future therapies are working.

Every participant and family who contributed to this study has helped move the field one step closer to effective treatments.

-ALSP

https://static1.squarespace.com/static/67943e3639d8cb65112c5846/t/6a68fe7847d2a36756993ca5/1785265784767/VigilIlluminateStudy.pdf

07/08/2026

Today marks one of the proudest moments in Sisters' Hope Foundation's history.

After months of listening, writing, reviewing, and bringing together voices from across the ALSP community, we have officially completed the Voice of the Patient Report for ALSP.

This report belongs to every patient who shared their story.
Every caregiver who spoke honestly about the challenges they face.
Every family member who continues to fight for more time with their loved ones.

Together, we have created a lasting resource that will help researchers, clinicians, industry partners, and regulators better understand what it truly means to live with ALSP.

Thank you to every patient, caregiver, clinician, researcher, volunteer, and supporter who made this possible. We are especially grateful to Vigil Neuroscience and Savanna Biotherapeutics for providing funding that helped make this project possible while allowing the report to remain an independent, patient-led resource.

Together, we are building the roadmap to cure ALSP.

View the report at https://www.sistershopefoundation.org/news-reports

-ALSP

05/07/2026

A newly published natural history study on CSF1R-ALSP highlights the progression of this rare and fatal neurological disease.

Researchers found that cognitive decline, aphasia, gait changes, loss of independence, and brain atrophy can progress rapidly — often within just 24 months. MRI findings also showed worsening White Matter Disease and significant brain changes over time.

For families living with CSF1R-ALSP, these findings reinforce something they already know too well: this disease affects far more than memory. It impacts movement, speech, independence, daily functioning, and every aspect of life.

This research provides important real-world clinical insight into how ALSP progresses through patient experiences, symptoms, imaging, and functional decline. Studies like this are critical to better defining the natural history of -ALSP, supporting earlier recognition and diagnosis, guiding clinicians and caregivers, and helping shape future clinical trials with meaningful endpoints.

Most importantly, this work helps move the field closer to what families urgently need — better treatments, improved care, and hope for the future.

https://link.springer.com/article/10.1007/s40120-026-00916-0

05/05/2026

ALSP Awareness Month: Movement Matters

Dementia doesn’t just take memory.
It takes movement away too.

Walking becomes slower.
Balance becomes harder.
Simple things—standing up, turning, getting through the day—start to change.

And once the decline starts, it doesn’t stop.

The less someone moves, the faster the body can decline.
This leads to weakness, rigidity, muscle atrophy, falls, and loss of independence.

We don’t talk about this enough.

Movement Matters.

Because rigidity is painful.
Muscle atrophy weakens the body.
And falls can be life-changing.

Movement is not optional… it’s essential.

👉 Follow along this month as we share simple ways to stay active and support brain health.

05/01/2026

May is ALSP Awareness Month 💜

ALSP is caused by mutations in the CSF1R gene, located at 5q32 — which is why we recognize this disease in the 5th month.

But this month is about more than awareness.
It’s about:
💜 Supporting families navigating the unimaginable
💜 Raising awareness so ALSP is seen and understood
🧬 Driving research toward a CURE

This Awareness Month, we’ll focus on Movement. With no FDA-approved treatment options we need to continue to support our loved ones through this journey. Quality of Life Matters. Movement Matters in brain health.

👉 Take action today:
Follow, share, and help us reach more families.

If you’re able, donate to support, raise awareness and find a Cure for ALSP.

Because families affected by ALSP don’t have time to wait.

04/16/2026

Today is National Healthcare Decisions Day

One of the hardest and most loving conversations you can have with your family is to talk to them about their wishes for care through the end-of-life.

Losing someone is already overwhelming—but when you don’t know what they would have wanted, it adds a whole different layer.

It can turn grief into second-guessing: Did I do the right thing? Would they have wanted this? That uncertainty can linger long after everything else settles.

A few things tend to make this especially hard:
• Decision pressure in emotional moments — You’re often forced to make choices quickly, without clarity, while already hurting.
• Guilt and doubt — Even when you act with love and the best intentions, it can still feel like you might’ve missed the mark.
• Family tension — Different people may have different ideas of what “they would have wanted,” which can create conflict.
• No sense of closure — Knowing someone’s wishes can bring a kind of peace; not knowing can leave things feeling unfinished.

When someone hasn’t made their wishes clear, the people who love them are left to carry that weight. And they usually do it the only way they can, trying to honor the person as best as they understand them.

The Conversation Project has resources to help start the conversation. Visit https://theconversationproject.org/ for more information.

04/05/2026

Think of dementia like a broken GPS.

The person is still “driving”, still thinking, deciding, and trying to make sense of things. But the system that helps them orient to time, place, and situation isn’t working reliably.

Sometimes the directions are correct.
Sometimes they’re outdated.
And sometimes they’re completely off.
But to them, it still sounds right.
So they may feel confident about where they’re going even if they’re headed in the wrong direction.
When we argue or correct, it can feel like someone insisting the GPS is wrong… while it’s the only guide they have.

A helpful shift:
They’re not choosing the wrong path, they’re following faulty directions.
Support isn’t about grabbing the wheel. It’s about gently helping reroute, with patience and reassurance along the way.

Address

PO Box 8
Myerstown, PA
17067

Website

http://www.sistershopefoundation.org/

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