PRINTER'S NO. 3871

THE GENERAL ASSEMBLY OF PENNSYLVANIA

HOUSE RESOLUTION

No.

1014

Session of

2018

INTRODUCED BY CRUZ, YOUNGBLOOD, DiGIROLAMO, DONATUCCI, KINSEY,

WATSON, HENNESSEY, NEILSON, PASHINSKI, TOOHIL, WARD,

BIZZARRO, BURNS, VAZQUEZ, HILL-EVANS, LONGIETTI, READSHAW,

Designating the month of September 2018 as "Leukodystrophy

Awareness Month" in Pennsylvania.

WHEREAS, Leukodystrophy is a rare and terminal disease

presenting itself in multiple manifestations that attack the

central nervous system, severely impacting physical abilities,

mental capacity and quality of life; and

WHEREAS, The group of rare disorders known as

leukodystrophies destroy the central nervous system by

disrupting the growth and maintenance of myelin, a sheath that

insulates nerve cells and destroys white matter in the brain;

together, it is as prevalent as cystic fibrosis; and

WHEREAS, Infants born with leukodystrophy appear normal at

birth, with symptoms appearing during infancy or childhood; and

WHEREAS, There is no cure for leukodystrophy, but treatment

may include medications, physical, occupational and speech

therapies and nutritional, educational and recreational

programs; and

WHEREAS, Additional treatment options such as bone marrow

transplantation are emerging due to continued research and

medical advances; and

Commonwealth to screen newborns for Krabbe disease, a

leukodystrophy; and

WHEREAS, X-linked adrenoleukodystrophy (X-ALD) was added to

the Federal Recommended Uniform Screening Panel in 2016; and

WHEREAS, Hospitals in this Commonwealth began screening all

newborns for X-ALD in April 2017; and

WHEREAS, It is imperative that parents learn about

leukodystrophy and understand the importance of screening and

early detection of Krabbe disease, X-ALD and other

leukodystrophies; therefore be it

importance of leukodystrophy awareness and encourage parents and

future parents to educate themselves on these diseases and take

the necessary steps to ensure the health of their children.