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Pennsylvania House of Representatives
https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20170&cosponId=26457
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House of Representatives
Session of 2017 - 2018 Regular Session

MEMORANDUM

Posted: October 1, 2018 02:29 PM
From: Representative Michael H. Schlossberg
To: All House members
Subject: Designating November 2018 as Adrenoleukodystrophy Awareness Month
 
In the near future I will be introducing legislation designating November 2018 as “Adrenoleukodystrophy Awareness Month” in Pennsylvania.

Adrenoleukodystrophy (ALD) is deadly genetic condition affecting 1 in 18,000 people. ALD knows no racial, ethnic or geographic boundaries. The disorder affects the X chromosome and is carried unknowingly by women. While females can display symptoms of the disorder, ALD severely affects boys and men. The most devastating form of ALD appears in childhood, generally between the ages of four and ten. ALD gradually ravages the brain, leads to blindness, deafness, seizures, loss of muscle control, progressive dementia and leads to death or permanent disability, usually within 2 to 5 years from point of diagnosis.
The best hope for those with ALD is early detection through newborn screening, which allows for early treatment. Bone marrow transplants have shown to be an effective treatment for ALD when diagnosis is made early.

I first learned about ALD when the mother of Kaleb came to share their story and the toll ALD has taken on Kaleb since his diagnosis. As heart-wrenching as Kaleb’s story is, we owe the family the duty to raise awareness of this disease so that others can take steps to be tested, seek treatment or provide the necessary bone marrow donation to save somebody else’s life.

More information about ALD is available through the ALD Foundation. http://aldfoundation.org/. Please joining me in co-sponsoring this resolution. If you have any questions about the resolution, please contact Geoff Brace (gbrace@pahouse.net) in my office.



Introduced as HR1147