PRINTER'S NO. 2217
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
251
Session of
2023
INTRODUCED BY BRENNAN, BARTON, SCHLEGEL, TWARDZIK, HILL-EVANS,
GALLAGHER, MADDEN, DONAHUE, KHAN, SCHLOSSBERG, NEILSON,
MARCELL, ROZZI, STEHR, WATRO, T. DAVIS, CEPEDA-FREYTIZ,
FLICK, BANTA, JOZWIAK AND KAZEEM, OCTOBER 27, 2023
REFERRED TO COMMITTEE ON HEALTH, OCTOBER 27, 2023
A RESOLUTION
Recognizing the month of May 2024 as "ALSP Awareness Month" in
Pennsylvania.
WHEREAS, Adult-onset leukoencephalopathy with axonal
spheroids and pigmented glia (ALSP) is a rare neurological
disease that is passed genetically from parent to child; and
WHEREAS, A parent with the mutated gene has a 50% chance of
passing the mutation to the parent's child; and
WHEREAS, ALSP affects both men and women and typically
exhibits symptoms between the ages of 30 and 50; and
WHEREAS, Symptoms of ALSP may include a decline in mobility
and psychological changes such as forgetfulness, loss of speech
and mood changes; and
WHEREAS, Other physical symptoms of ALSP include muscle
spasms, a reduced feeling for pain and touch and an inability to
hold posture; and
WHEREAS, Because of similar symptoms, this disease may be
misdiagnosed as another disease such as frontal lobe dementia,
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Parkinson's disease or primary progressive multiple sclerosis;
and
WHEREAS, While the estimated number of people thought to have
ALSP in the United States is 10,000, the exact number of cases
of this disorder is unknown; and
WHEREAS, It is difficult to record the exact number of ALSP
cases, partially because of misdiagnoses and also because the
majority of those with the mutated gene do not know they have it
until they experience symptoms; and
WHEREAS, To be formally diagnosed as having ALSP, genetic
testing is necessary; and
WHEREAS, The current treatment options for ALSP are extremely
limited, with no FDA-approved therapies available; and
WHEREAS, ALSP often does not present itself until a person is
in their forties and has already passed it to their children;
and
WHEREAS, The Sisters' Hope Foundation is a nonprofit
organization that raises awareness and understanding of ALSP and
supports those living with or caring for those living with ALSP,
fighting for the mission of seeing the first survivor of ALSP;
and
WHEREAS, The Sisters' Hope Foundation creates resources and
connections within the ALSP community and offers financial
support to those who have the disease; and
WHEREAS, The Sisters' Hope Foundation encourages those with a
family history of ALSP to undergo a genetic test so that they
have the option in participating in treatments, clinical trials
and research that will help to find a cure; and
WHEREAS, It is important that awareness be raised surrounding
this deadly disease, which may also help families recognize
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patterns in their family history and perhaps realize that
seemingly unconnected illnesses were part of a larger pattern
caused by this disease; therefore be it
RESOLVED, That the House of Representatives recognize the
month of May 2024 as "ALSP Awareness Month" in Pennsylvania.
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