Sisters' Hope Foundation

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.

03/26/2026

03/20/2026

Did you know:
Movement Matters when you have ALSP and brain diseases. Once you stop, movements may stop so continue to push yourself everyday. Even if it's just a little step, a little movement, a little stretch.
On this first day of spring, make it your goal to keep moving forward!

02/02/2026

12/12/2025

California Institute of Regenerative Medicine has approved a grant to Savanna Biotherapeutics for $12,993,456 to continue their work in ALSP. This investment dedicated to preclinical development for CSF1R leukoencephalopathy (ALSP) is a significant milestone in their work towards a CURE.

https://www.cirm.ca.gov/about-cirm/newsroom/press-releases/cirm-approves-over-160m-to-support-preclinical-and-clinical-research-advances-education-opportunities-and-access-to-clinical-trials/

Access to clinical trials shouldn’t depend on where you live.

That’s why CIRM has approved $27 million to establish three Community Care Centers of Excellence (CCCEs) across California—in South Los Angeles, the Inland Empire and Desert Region, and in the Central Valley.

These centers will expand access to cutting-edge stem cell and gene therapy clinical trials for conditions such as cancer, Parkinson’s, and sickle cell disease, while also training the next generation of regenerative medicine professionals.

Together, the CCCEs mark a major step toward ensuring Californians have access to life-changing treatments close to home.

Read the full press release here: https://bit.ly/3Wwl4Rq