ALSP Resources

 

Click the links below to read, print and download your copy.

Guide to ALSP | ALSP Caregiver’s Guide

 

Medical Expense & Medical Travel Reimbursement 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.

We can help pay for:

  • Treatment-related co-pays, deductibles, and services not covered or denied by your insurance company.
  • Prescription medication related to prescribed treatment and over the counter medication.
  • Medical equipment including cane, walker and/or wheelchair. Incontinence products.
  • Travel expenses directly related to a clinical neurology appointment within your “home” country or within a reasonable distance of your “home” country. May include; airfare, hotel, rental car or rideshare, food and drinks.

Program Eligibility Criteria:

To be eligible for Financial Assistance, you must

  • Be a United States citizen or permanent resident of the U.S. or U.S. territory. Exceptions may apply and will be approved on an as needed basis.
  • Have medical insurance and provide proof of insurance.
  • Have an ALSP diagnosis (CSF1R mutation) confirmed by a genetic test. Must provide proof of CSF1R mutation.

Note:  These programs are for patients and their families who reside in the United States, but exceptions will be reviewed.  SHF’s ability to help outside of the US is limited.  However, we will review and consider all requests.

Exclusions:

  • Due to the extremely high cost of certain medical procedures including bone marrow transplant, SHF is not able to offer financial assistance when insurance denies coverage for this procedure.
  • Medical insurance premiums are not an eligible expense for reimbursement.

For more information and how to apply, click the link below.

Printable Aid Packet

 

Frontiers Neurology latest publication on ALSP: 

I am pleased to share with you the most recent ALSP position paper is now published in Frontiers Neurology: https://doi.org/10.3389/fneur.2021.788168.

This paper is a comprehensive review of the available published literature and lays a foundation to establish an effective clinical rationale and address the gaps in order to inform the design of clinical trials and develop therapeutic agents for ALSP.

Below you can find multiple links to studies and potential treatments for ALSP.









 

Caregivers

Caregivers play an important role in the lives of individuals with ALSP. A diagnosis of ALSP can be difficult, emotional, and overwhelming for everyone involved, especially caregivers. As a caregiver, you will have questions and concerns of your own. It is important to know that while your loved one’s life may change, and yours with it, you are not alone.

By educating yourself on ALSP symptoms, long-term effects, and potential treatments, you will have information to help your loved one and yourself deal with the daily impact of ALSP on your lives. The following websites have education on caregiving and caregiver support.





 

Glossary of Terms

Printable Glossary (PDF)

ALSP: adult-onset leukoencephalopathy with axonal spheroids and pigmented glia; ALSP was formerly known as two different disorders, pigmentary orthochromatic leukodystrophy (POLD) and hereditary diffuse leukoencephalopathy with spheroids (HDLS)

Autosomal dominant: a pattern of inheritance where a person has one normal and one mutated copy of a gene

Axonal spheroids: swelling within part of a neuron that transmits signals; usually found with a loss of myelin

Chromosome: a long piece of DNA that carries genetic material called genes

CSF1R: colony-stimulating factor 1 receptor

CT: computed tomography combines multiple x-rays to produce a more complete image of the body

Gene: part of a chromosome that carries enough DNA to make a specific characteristic of a person

Glia: supportive cells in the nervous system

HSCT: hematopoietic stem cell therapy; a type of bone marrow transplant that uses donor stem cells to replace damaged or mutated stem cells

Leukodystrophy: rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and nerves that are caused by genetic mutations that lead to loss of myelin

Leukoencephalopathy: a type of leukodystrophy that mainly affects the brain and spinal cord

MRI: magnetic resonance imaging uses magnetic fields and radio waves to produce images of the body

Macrophage: a large white blood cell of the immune system that attacks foreign things in the body

Microglia: a type of glia cell that acts like a macrophage in the brain

Multiple sclerosis: a nervous system disease that affects the brain and spinal cord, and that damages myelin

Mutation: a change in the structure of a gene that may change the way the gene functions or what it makes

Myelin: insulating sheath around nerve fibers that help speed up neuron signals

Neurons: cells in the brain, spinal cord, and nerves that are responsible for transmitting signals from one part of the body to another

Parkinsonian tremor: an involuntary tremor that happens at rest but lessens during sleep or activity