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House of Representatives
Session of 2023 - 2024 Regular Session


Posted: October 12, 2023 09:23 AM
From: Representative Tim Brennan and Rep. Jamie Barton, Rep. John A. Schlegel, Rep. Tim Twardzik
To: All House members
Subject: Recognizing May 2024 as “ALSP Awareness Month”
Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP) is a rare genetic disease believed to affect thousands of people throughout the United States.  
I experienced the death of two friends, who were sisters, within the span of a year. Both were in their mid-forties and left behind loved ones far too early. These same sisters lost their mother, aunt and uncle to this horrible disease. One of their son’s already has signs of the disease.
A surviving sister, a twin of one of the deceased sisters, became the founder of a non-profit organization, Sisters’ Hope (https://sistershopefoundation.org/), which supports families dealing with ALSP, raises awareness and gives families dealing with this rare condition hope.
Representatives Barton, Schlegel and Twardzik represent the surviving sister and family members. Representative Barton has also supported the non-profit in his home district.  
Its symptoms often begin with reduced motor abilities and cognitive decline, which can often lead to the disease being misdiagnosed as Parkinson’s disease or multiple sclerosis, and only genetic testing can lead to a formal diagnosis.  There is no cure and existing treatments only mitigate the symptoms. Further, ALSP often does not present itself until a person is in their forties and has already passed the disease on to their children.
It is essential that we raise awareness to this rare disease and support the generations of families affected by ALSP. This may help families recognize patterns in their family history, and perhaps realize that seemingly unconnected illnesses were part of a larger pattern caused by this disease.
As such, we will be introducing a resolution to recognize May 2024 as “ALSP Awareness Month.” Please join us as a cosponsor so that we may raise awareness and one day, find a cure.  

Introduced as HR251