The Pennsylvania House of Representatives has passed a resolution, co-sponsored by Representative John Schlegel, to designate May 2024 as ALSP Awareness Month in the state. The disease, known as adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP), is a rare hereditary condition that is often misdiagnosed due to symptoms similar to those of Parkinson’s disease or multiple sclerosis. Symptoms can include mobility decline, muscle spasms, reduced pain sensation, and psychological changes. ALSP typically manifests in individuals in their 40s and there is currently no cure.
Representative Schlegel highlighted the impact of ALSP on Heidi Edwards from North Lebanon Township, who has lost several family members to the disease. “Heidi Edwards of North Lebanon Township has lost several family members to ALSP, including her mother, two sisters, an aunt and an uncle, and one of her nephews is already exhibiting symptoms,” said Schlegel.
Research conducted by the University of Pennsylvania identified the CSF1R gene mutation responsible for ALSP within Edwards’ family. “The University of Pennsylvania…correctly identified the CSF1R gene mutation and determined that immediate family members have a 50% chance of inheriting the gene that causes the disease,” Schlegel explained. Although genetic testing showed that Edwards did not carry the affected gene herself, she founded Sisters’ Hope Foundation to support families dealing with ALSP and raise awareness about the condition.
Schlegel acknowledged his fellow representatives who supported this resolution: “Heidi is my constituent and a friend of my colleagues Reps. Tim Brennan (D-Bucks), Jamie Barton (R-Berks, Schuylkill) and Tim Twardzik (R-Schuylkill), who co-sponsored this resolution with me.”
For further information on Sisters’ Hope Foundation, contact Representative John Schlegel’s office at 717-260-6452 or dpinkham@pahousegop.com.
