Sisters' Hope Foundation

Sisters' Hope Foundation Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Sisters' Hope Foundation, Medical and health, PO Box 8, Myerstown, PA.

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 funding 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

When someone is diagnosed with ALSP, the hardest part often isn't the appointment. It's the drive home, when you realize...
09/15/2026

When someone is diagnosed with ALSP, the hardest part often isn't the appointment. It's the drive home, when you realize nobody handed you a playbook or guide about what happens next. You are left wondering, “how am I going to handle this alone.”

We've spent a long time building the one guide we wish our family had been given. The guide has been designed to help the newly diagnosed, the caregiver and the entire family affected by ALSP.

The Newly Diagnosed Kit & Caregiver Manual covers what to do in the first thirty days, the questions worth bringing to your neurologist, what to expect as the disease progresses, how to make a home safer, how to plan ahead and an entire section for caregivers, because ALSP doesn't only affect the person who receives the diagnosis.

There are pages to print, complete and carry with you: an emergency information sheet, a medication list, an appointment planner.

Please share this manual with a family who needs it, your own family or a neurologist who's never heard of ALSP.

Download it here: https://www.sistershopefoundation.org/resources

From the Vault...3 years ago, Heidi’s niece and Treasurer of the Board, Madison Boyer had her first video interview. Mad...
09/10/2026

From the Vault...3 years ago, Heidi’s niece and Treasurer of the Board, Madison Boyer had her first video interview.

Madison recently graduated from Penn State University School of Nursing and is working as a Registered Nurse in Oncology.

We are incredibly honored to share that our very own, Heidi Edwards, President & Founder, has been chosen as a Rare Dise...
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/

When Hope Changes…
08/12/2026

When Hope Changes…

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

A major step forward for ALSP research.The newly published ILLUMINATE Natural History Study is the first prospective stu...
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

Today marks one of the proudest moments in Sisters' Hope Foundation's history.After months of listening, writing, review...
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

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

May is ALSP Awareness Month 💜ALSP is caused by mutations in the CSF1R gene, located at 5q32 — which is why we recognize ...
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.

Address

PO Box 8
Myerstown, PA
17067

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