(ALSP) who are in need of genetic counseling and may be considering genetic testing.
ALSP is a rare genetic condition caused by a change to the CSF1R gene. Fewer than 1 in a million people are born with ALSP, but because this condition is inherited in a dominant fashion, parents, siblings, or children of those with genetically confirmed ALSP are at risk of also having inherited the condition.
ALSP Overview:
- The condition may be inherited from a parent, or it can occur randomly before birth in a single individual (this is called a de novo variant or "mutation")
- Symptoms are caused by lesions within the white matter of the brain
- The average age of diagnosis is 43
- Symptoms of ALSP almost always begin before the age of 60 and have been reported to manifest as early as age 18
- Symptoms of ALSP can appear similarly to Parkinson's Disease, Alzheimer's Disease, dementia, Multiple Sclerosis, Schizophrenia, and others
- There is no FDA approved treatments or cure for ALSP
- ALSP is ultimately terminal, but clinical trials and research are the best hope for advances in care
Qualifying Individuals Only: If you meet qualifying criteria for the testing program you will be eligible for genetic counseling and ALSP testing services through Clover Genetics with the cost covered by Sisters' Hope Foundation. Final qualification decisions will be made by Sisters' Hope Foundation following your registration for genetic counseling services using your eligibility code.
Please answer the following questions accurately to the best of your ability to determine your eligibility.
