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12/12/2019 08:11 AM
Pennsylvania House of Representatives
https://www.legis.state.pa.us/cfdocs/Legis/CSM/showMemoPublic.cfm?chamber=H&SPick=20190&cosponId=30160
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House of Representatives
Session of 2019 - 2020 Regular Session

MEMORANDUM

Posted: August 23, 2019 02:06 PM
From: Representative Angel Cruz
To: All House members
Subject: Raising Leukodystrophy and Krabbe Awareness
 
A parent’s worst nightmare is when your child, especially a baby, is sick and a diagnosis is unknown. The feeling of helplessness as test after test is done, while your child’s symptoms progress. Finally, a diagnosis, but the prognosis is unimaginable – your child will not get better but only continue to worsen and it’s too late for any treatment.


Parents whose children are born with a genetic disorder such as a leukodystrophy have experienced this terrifying scenario. Leukodystrophies are a varied assortment of genetic disorders that affect the nervous system. These disorders are progressive and include diseases such as adrenoleukodystrophy (X-ALD) and globoid cell leukodystrophy (Krabbe). Infants born with these disorders, including Krabbe (pronounced Crab A), often appear normal at birth before symptoms begin between the ages of 3 and 6 months.


Advances in health research and science have established that early detection of leukodystrophies and Krabbe through newborn screening may delay disease onset when treatment is given before symptoms begin. In fact, disease progression can be slowed, and symptoms can be managed or eliminated altogether in some cases.


As part of my continued effort to advocate for newborn screening and rare genetic disorders on behalf of affected children and families, I ask that you join me in raising awareness by designating September 2019 as “Leukodystrophy Awareness Month” and “Krabbe Awareness Month” in Pennsylvania.


Thank you in advance for your consideration.


If you have any questions or concerns, please contact my Harrisburg office at 717-705-1925.



Document #1

Introduced as HR481

Description: Designating the month of September 2019 as "Leukodystrophy Awareness Month" in Pennsylvania.
  View Attachment
 

Document #2

Introduced as HR480

Description: Designating the month of September 2019 as "Krabbe Disease Awareness Month" in Pennsylvania.
  View Attachment