PRINTER'S NO. 2188
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
478
Session of
2015
INTRODUCED BY CRUZ, YOUNGBLOOD, DONATUCCI, BISHOP, V. BROWN,
THOMAS, HENNESSEY, SONNEY, DUSH, J. HARRIS, DiGIROLAMO,
KIRKLAND, McNEILL, DRISCOLL, BIZZARRO, SCHLOSSBERG,
CALTAGIRONE, LONGIETTI, ROZZI, KINSEY, VEREB, WHEELAND,
D. COSTA, COHEN, MURT, MILLARD, PASHINSKI, WATSON, EVERETT,
MARSICO, READSHAW, GROVE, SCHWEYER, MAJOR, MAHONEY, GINGRICH
AND ROSS, SEPTEMBER 18, 2015
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
SEPTEMBER 18, 2015
A RESOLUTION
Designating the month of September 2015 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;
and
WHEREAS, Leukodystrophies are progressive, meaning that they
tend to get worse throughout the life of the patient; and
WHEREAS, There are over 40 known variations and even more
unidentified forms of leukodystrophy that exist; and
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WHEREAS, When all variations of leukodystrophy are grouped
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
for most leukodystrophies includes medications, physical,
occupation and speech therapies, and nutritional, educational
and recreational programs; and
WHEREAS, Additional treatments for some leukodystrophies,
such as bone marrow transplantation, are emerging due to
continued research and medical advances; and
WHEREAS, Organizations, including, but not limited to, the
United Leukodystrophy Foundation, Hunter's Hope Foundation, the
Myelin Project, the MLD Foundation and the Adrenoleukodystrophy
Foundation have dedicated their work to public education,
disease research and patient treatment; and
WHEREAS, Act 148 of 2014 requires hospitals in this
Commonwealth to screen newborns for Krabbe disease, a
leukodystrophy; and
WHEREAS, It is imperative that parents learn about
leukodystrophy and understand the importance of screening for
and detecting Krabbe disease and other leukodystrophies early;
therefore be it
RESOLVED, That the House of Representatives designate the
month of September 2015 as "Leukodystrophy Awareness Month" in
Pennsylvania; and be it further
RESOLVED, That the Commonwealth officially recognize the
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.
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