Sisters' Hope Foundation

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Sisters' Hope Foundation Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Sisters' Hope Foundation, 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

Meet the newest CHANGEMAKER for Citizen Health!Ever feel like you have too many tabs open in your brain? That’s caregivi...
10/11/2026

Meet the newest CHANGEMAKER for Citizen Health!

Ever feel like you have too many tabs open in your brain? That’s caregiving for me. 💜

I’ve cared for my mom, my sisters, and now my husband. Even after all these years, keeping track of symptoms, medications, appointments, and everything in between can feel overwhelming.

That’s why I’m excited to be partnering with Citizen Health as a Changemaker and sharing my experience using Ari.

Over the next few weeks, I’ll show you how I’m using it in our everyday life, what helps, what I’m learning, and what other patients and caregivers might find useful.

We spend so much time making life easier for the people we love. Having something that helps us, too, matters.

Try Ari for free here: https://ari.citizenhealth.com/?code=HEIDI

What’s the hardest part of keeping track of your loved one’s care?

Tell me in the comments.



Paid partnership with .Health

09/30/2026

You don’t need to know someone with ALSP to make a difference. You can start by helping someone else learn about it.
Follow Sisters' Hope Foundation. Share this post. Invite a friend to learn about our mission. If you’re able, make a donation to support our work.
Every new connection is another opportunity to bring this community together.
Learn more or give: sistershopefoundation.org
Questions or ideas? Email [email protected].
Thank you, ULF, for making room for our story during Leukodystrophy Awareness Month.

09/29/2026

A diagnosis can leave you wondering where to turn or how to begin the next conversation.
At ' Hope Foundation, we want families affected by ALSP to know there is a community they can reach out to. Our website offers educational resources, support group information, and ways to connect.
Whether you are living with ALSP, caring for someone, or supporting a loved one, you are welcome here.
Visit www.sistershopefoundation.org/support-groups or email [email protected].
Save this post for yourself or share it with someone who could use a connection.

09/29/2026

What do you wish more people understood about life with ALSP?
For patients and caregivers, the answer comes from everyday experience. Those experiences deserve a place in conversations about research and care.
The ALSP Voice of the Patient report brings those perspectives forward. We are grateful to everyone who shared their story and helped others understand what matters to families.
Explore the report through our Sisters' Hope Foundation website, and help us keep patient voices at the center of the conversation: sistershopefoundation.org/news-reports

09/29/2026

Sisters' Hope Foundation began with love for two sisters: Heather and Holly.
Our founder, Heidi Edwards, lost her older sister Heather and her twin sister Holly to ALSP. Their memory remains at the heart of this foundation.
Behind our name is a family. Behind our mission are many more families, each with their own story, questions, and hopes.
We carry that love into the work we do and the community we continue to build.
Meet Sisters’ Hope: sistershopefoundation.org/board-staff

09/29/2026

Hello, ULF community! We’re Sisters' Hope Foundation, and we’re grateful to join you for .
Our mission centers on families affected by ALSP: offering support, raising awareness, and advocating for research. Our work is deeply personal, and our commitment is simple: families deserve to feel heard, connected, and supported.
Today, we’ll share the people and purpose behind Sisters’ Hope and ways you can join us.
Together for families. United for a cure.
Get to know us: sistershopefoundation.org/our-story

Thank you to everyone who supported our August Pampered Chef fundraiser. We raised $641.70.
09/24/2026

Thank you to everyone who supported our August Pampered Chef fundraiser. We raised $641.70.

Hiring someone to care for your loved one is a big step. There is so much you want them to know, and it’s easy to forget...
09/23/2026

Hiring someone to care for your loved one is a big step. There is so much you want them to know, and it’s easy to forget something.

We created the Sisters’ Hope Caregiver Training Checklist to help families walk a new caregiver through their loved one’s needs, routines, and care.

We hope this makes the transition a little easier. 💜

https://www.sistershopefoundation.org/resources

-ALSP

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

Address

PO Box 8
Myerstown, PA
17067

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