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House Co-Sponsorship Memoranda
House of Representatives
Session of 2019 - 2020
Regular Session
MEMORANDUM
| Posted: | September 3, 2020 01:13 PM |
|---|---|
| From: | Representative Angel Cruz |
| To: | All House members |
| Subject: | Leukodystrophy Awareness Month |
| Leukodystrophies are a group of rare genetic conditions that impact the brain, spinal cord, and peripheral nerves. Children with leukodystrophy often appear healthy and achieve their milestones, but then lose the ability to crawl, walk, swallow, speak, and eat. In most cases, once children develop symptoms, the irreversible damage to the brain and central nervous system cannot be treated. For diseases like Krabbe, early detection through newborn screening is crucial for affected children to receive potentially lifesaving treatment, which is only effective if administered before a child is symptomatic. 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 2020 as “Leukodystrophy Awareness Month” in Pennsylvania. The month of September is a time to increase awareness of all forms of leukodystrophy and raise awareness of how having a child with a devastating illness impacts a family. |
Introduced as HR1011
Memo Updated: September 3, 2020 01:14 PM