Pennsylvania House Republican Caucus
05/08/2024 | Press release | Distributed by Public on 05/08/2024 14:19
House Adopts Schlegel Resolution on Rare Disease Awareness
May. 08, 2024
HARRISBURG - Today, the House of Representatives passed House Resolution 251, co-sponsored by Rep. John Schlegel (R-Lebanon), which designates May 2024 as ALSP Awareness Month in Pennsylvania.
Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia, or ALSP, is a rare hereditary disease that is often misdiagnosed because its symptoms are commonly associated with other diseases, such as Parkinson's disease or multiple sclerosis. Symptoms may include a decline in mobility, muscle spasms, a reduced feeling of pain and psychological changes. ALSP often does not present itself until an individual enters their 40s and has already passed the affected gene to their children. There is no cure.
"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.
"The University of Pennsylvania, which had been studying her family's case, correctly identified the CSF1R gene mutation and determined that immediate family members have a 50% chance of inheriting the gene that causes the disease. While genetic testing found Heidi did not have the affected gene, she established Sisters' Hope Foundation, a nonprofit that supports families afflicted with ALSP, raises awareness and gives affected families hope for a cure.
"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," said Schlegel.
For more information about Sisters' Hope Foundation, visit sistershopefoundation.org/.
To see Schlegel's remarks in support of the resolution, visit here.
Representative John Schlegel
101st Legislative District
Pennsylvania House of Representatives
Media Contact: Donna Pinkham
717.260.6452
[email protected]
RepSchlegel.com / Facebook.com/RepSchlegel
Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia, or ALSP, is a rare hereditary disease that is often misdiagnosed because its symptoms are commonly associated with other diseases, such as Parkinson's disease or multiple sclerosis. Symptoms may include a decline in mobility, muscle spasms, a reduced feeling of pain and psychological changes. ALSP often does not present itself until an individual enters their 40s and has already passed the affected gene to their children. There is no cure.
"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.
"The University of Pennsylvania, which had been studying her family's case, correctly identified the CSF1R gene mutation and determined that immediate family members have a 50% chance of inheriting the gene that causes the disease. While genetic testing found Heidi did not have the affected gene, she established Sisters' Hope Foundation, a nonprofit that supports families afflicted with ALSP, raises awareness and gives affected families hope for a cure.
"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," said Schlegel.
For more information about Sisters' Hope Foundation, visit sistershopefoundation.org/.
To see Schlegel's remarks in support of the resolution, visit here.
Representative John Schlegel
101st Legislative District
Pennsylvania House of Representatives
Media Contact: Donna Pinkham
717.260.6452
[email protected]
RepSchlegel.com / Facebook.com/RepSchlegel
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