Patient, Family & Caregiver Support

Schedule 1 on 1 meetings with Heidi Edwards – President & Founder

Being diagnosed with ALSP is confusing and scary. You will have many unanswered questions. Most practitioners have never heard of this rare, neurodegenerative disease.

There is no doubt you have experienced a complicated journey to a diagnosis. Whatever your personal story, Sisters’ Hope Foundation understands the diagnostic journey, the fight for answers, and the need to just connect with someone who’s walked in your shoes.

Sisters’ Hope Foundation is available to help ease this burden by connecting you with an individual whose kind, non-judgmental, easy to talk to and who’s lived the journey with her own family members.

Schedule A 1 On 1 Meeting by emailing info@sistershopefoundation.org

Heidi 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

 


Disclaimer:

Heidi’s insights will assist you in having informed and purposeful conversations with your healthcare provider or aid in uncovering useful resources in your area. Heidi aims to create a safe space in which you can interact and seek support knowing that you are interacting with someone who has gone through a similar experience.

Any conversations with Heidi should not be considered medical advice.

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Support Group Meetings

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