Mr. PATRICK J. MURPHY of Pennsylvania.
Madam Speaker, I rise today in support of H.R. 2295, to amend the Public
Health Service Act to provide for the establishment of an Amyotrophic
Lateral Sclerosis Registry.
ALS, more commonly known as
Lou Gehrig's disease, is a particularly cruel disease and is always
fatal, usually between two and five years after diagnosis. One of the
very few trends researchers have been able to identify is that veterans
are twice as likely to die from ALS as those who have not served in
the military. However, Madam Speaker, it can strike at any time, regardless
of age, race, gender or nationality.
This fight is personal for
me, as my good friend Shelbie Oppenheimer, and her husband Jeff have
long been advocates for those with ALS.
Shelbie was diagnosed when
she was just 28 years old and has since spent countless hours educating
friends, family, community members and elected officials. Shelbie has
been fortunate--still fighting after 10 years.
The Oppenheimers have created
a wonderful organization based in my district in Bucks County, Pennsylvania:
Shelbie.org.
Along with many community partners,
they work tirelessly to provide opportunities for the children of ALS
patients. Jeff and Shelbie, along with their daughter Isabel, are a
constant inspiration to me and I join them in the fight to turn ALS
from a disease to a memory.
It is for Shelbie, Jeff, Isabel
and countless others that I am proud to be a cosponsor of this bill.
This legislation will create, through the Centers for Disease Control
and Prevention, a single, nationwide ALS registry. This Registry is
essential to advancing the search for treatments and the cure.
Since we don't know the cause
or the cure of ALS, research is the key. Enabling researchers, doctors
and patients to understand the trends and history of the disease is
vital to moving forward. The Registry will gather data on the environmental
and occupational factors that may contribute to the disease, including
the age, race and ethnicity of individuals with ALS, the patients' family
histories and other information that may be beneficial to advancing
research and care.
Madam Speaker, I urge all of
my colleagues to join this fight and support the ALS Registry Act and
vote yes on H.R. 2295. |