Assembly Resolution No. 2284

BY: M. of A. Rules (Hevesi)

MEMORIALIZING Governor Kathy Hochul to proclaim
September 7, 2024, as Duchenne Muscular Dystrophy
Awareness Day in the State of New York

WHEREAS, It is the custom of this Legislative Body to recognize
official days that are set aside to increase awareness of serious
illnesses that affect the lives of citizens of New York State; and

WHEREAS, Attendant to such concern, and in full accord with its
long-standing traditions, this Legislative Body is justly proud to
memorialize Governor Kathy Hochul to proclaim September 7, 2024, as
Duchenne Muscular Dystrophy Awareness Day in the State of New York, in
conjunction with World Duchenne Muscular Dystrophy Awareness Day; and

WHEREAS, Duchenne muscular dystrophy is the most common fatal
genetic disorder diagnosed in childhood, affecting approximately one in
every 5,000 male births (about 20,000 new cases each year worldwide);
since the Duchenne gene is found on the X-chromosome, it primarily
affects boys, however, it occurs across all races and cultures; and

WHEREAS, Duchenne muscular dystrophy results in progressive loss of
strength and is caused by a mutation in the gene that encodes for
dystrophin; since dystrophin is absent, the muscle cells are easily
damaged; and

WHEREAS, Progressive muscle weakness caused by the condition leads
to serious medical problems, particularly issues relating to the heart
and lungs; young men with this debilitating disease typically live into
their late twenties; and

WHEREAS, With the ability to affect anyone, Duchenne muscular
dystrophy can be passed from parent to child, but approximately 35% of
cases occur because of a random spontaneous mutation; and

WHEREAS, Although there are now seven FDA approved medical
treatments that may help slow its progression, there is currently no
cure for Duchenne muscular dystrophy; and

WHEREAS, World Duchenne Muscular Dystrophy Awareness Day is meant to
highlight the importance of identifying and communicating early signs of
this genetic disorder and to promote the message that the key to
managing this disease is early diagnosis; and

WHEREAS, As one of the first states to add Duchenne to its newborn
screening panel, New York continues to be a leader in early diagnosis
and treatment of this disease; now, therefore, be it

RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim September 7, 2024, as
Duchenne Muscular Dystrophy Awareness Day in the State of New York; and
be it further

RESOLVED, That a copy of this Resolution, suitably engrossed, be
transmitted to The Honorable Kathy Hochul, Governor of the State of New
York.