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Resources

Being diagnosed with ALSP is confusing and frightening. You will have many questions, and most practitioners have never heard of this rare, neurodegenerative disease. Sisters’ Hope Foundation is here to help.

We understand the diagnostic journey, the fight for answers, and the need to connect with someone who’s walked in your shoes.

Sisters’ Hope Foundation is here it walk with you as you navigate your ALSP journey. We will provide support, guidance, and resources. You may have questions about:

  • Clinicians who are familiar with this rare disease.

  • How to care for someone diagnosed with ALSP.

  • Current research being done and treatment options.

  • Medical equipment needs.

  • The impact of the disease on the family.

  • How to deal with grief

Understanding ALSP Guide
ALSP Patient Manual
ALSP Caregiver Manual
Clinician Resources
Schedule a 1-1 Meeting

Financial Assistance Program

Sisters Hope Foundation provides financial assistance to ALSP patients for medical expenses and medical travel directly related to ALSP. The program is on an as needed basis and provides financial assistance with co-pays, deductibles and services not covered or services denied by your insurance company.

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Financial Assistance Packet

Global Reach

Sisters Hope Foundation represents ALSP patients worldwide.

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Disclaimer: Our insights will assist you in having informed and purposeful conversations with your healthcare provider or aid in uncovering useful resources in your area. Our team aims to create a safe space in which you can interact and seek support knowing that you are speaking with someone who has gone through a similar experience. Any conversations with Sisters’ Hope Foundation should not be considered medical advice.