ALSP.

Support. Awareness. Cure.

We’re in this together.

Sisters’ Hope Foundation provides support, resources and advocacy for those impacted by an ALSP diagnosis to improve their quality of life and build community.

Our mission is to empower families affected by ALSP through increasing awareness, educating the public, advocating for research and funding to improve treatment options and providing assistance to those in need.

Did you know? ALSP has multiple genes that can cause the disease. CSF1R is the most well known but BANDDOS, AARS1, AARS2 and in some cases the genetic mutation hasn’t been determined as of yet. That makes ALSP an umbrella term.

ALSP Umbrella

Support

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Awareness

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Cure ALSP

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Support â—Ź Awareness â—Ź Cure ALSP â—Ź âž”

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Join us for fundraisers, outings, conferences and support.

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Upcoming Events
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Information about causes, symptoms and diagnosis.

what is alsp?

Understanding ALSP
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Trials & Treatments

The latest on research studies, clinical trials and treatments.

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GIVE HOPE

THE VOICE OF THE PATIENT REPORT (ALSP)

Thank you to every patient, caregiver, clinician, researcher, volunteer, and supporter who made this milestone possible.

To the patients and caregivers who courageously shared their journey—thank you for trusting us with your stories. Because of your willingness to speak openly, future researchers, clinicians, drug developers, and regulators will better understand what it truly means to live with ALSP—not just in the clinic, but in everyday life.

This report is more than a publication. It is your voice, your experiences, and your legacy. Together, we are building the roadmap to cure ALSP, and your voice is leading the way.

THE VOICE OF THE PATIENT REPORT (ALSP)

Proud Partners With

  • Logo of the United Leukodystrophy Foundation featuring a blue brain outline with a red heart in the center, and the words 'United Leukodystrophy Foundation' in red and blue text.
  • Logo of NORD, the National Organization for Rare Disorders, featuring a stylized blue and orange snowflake or molecular structure and the text 'NORD' in large orange letters with the full organization name below.
  • Global Genes logo showing a blue and teal ribbon shaped like a DNA strand with the text "Global Genes" and slogan "Allies in Rare Disease".
  • Graphic with the logo of the Global Leukodystrophy Initiative, featuring a 3D globe with interconnected blue lines and a highlighted blue area, alongside text that reads "A Rare Diseases Clinical Research Network Consortium" in dark blue.
  • Logo for Alex Leukodystrophy Charity featuring blue background, yellow and white text, and graphic of yellow dots with a white and blue circular emblem.
  • Logo of the American Brain Coalition featuring silhouettes of two human heads, one in red and one in blue, with brain outlines, and the text 'American Brain Coalition' in blue lettering.
  • Logos of Community Congress and Schuylkill Chamber of Commerce with Member badges
  • Blue badge with white text reading 'FDA Total Product Life Cycle Advisory Program (TAP)' and the American Brain Coalition logo, with a gold ribbon at the bottom saying 'Collaborating Partner'.

NEED TO TALK?

Newly diagnosed? Looking for more information?

Schedule a one-on-one meeting with our team.

Schedule a Call âž” heidi@sistershopefoundation.org