Senate Resolution No. 1332

BY: Senator TEDISCO

MEMORIALIZING Governor Kathy Hochul to proclaim
September 15, 2022, as Myotonic 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 15, 2022, as
Myotonic Dystrophy Awareness Day in the State of New York, in
conjunction with the observance of International Myotonic Dystrophy
Awareness Day; and

WHEREAS, Myotonic dystrophy is a rare, multi-systemic, inherited
disease that affects an estimated 1 in 2,100 people, or over 3.6 million
individuals across the world; and

WHEREAS, Myotonic dystrophy is commonly referred to as DM, an
abbreviation of the Latin name used by doctors and researchers
worldwide: dystrophia myotonica; other names for DM include myotonic
muscular dystrophy, Steinert's Disease for DM1, and proximal myotonic
myopathy for DM2; and

WHEREAS, Globally, millions of people are living with myotonic
dystrophy but do not know they have the disease and are in need of care;
and

WHEREAS, Myotonic dystrophy is the most common form of adult
muscular dystrophy and considered the most variable of all known
conditions; and

WHEREAS, Mutations prevent genes from carrying out their functions
properly, which can impact multiple body systems; and

WHEREAS, Myotonic dystrophy is inherited; people living with
myotonic dystrophy have a 50% chance of passing on the mutated gene to
their children; and

WHEREAS, Myotonic dystrophy does not always look the same; the
different body systems affected, the severity of symptoms, and the age
of onset of those symptoms vary greatly between individuals, even in the
same family; and

WHEREAS, People living with myotonic dystrophy experience varied and
complex symptoms, from skeletal muscle problems, to heart, breathing,
digestive, hormonal, speech and swallowing, diabetic, immune, excessive
daytime sleepiness, and early cataracts and vision challenges, as well
as cognitive difficulties; and

WHEREAS, Myotonic dystrophy symptoms usually become more severe with
each generation, yet there is currently no cure and there are no
approved treatments; and

WHEREAS, Over 35 biopharmaceutical companies are leading promising
research which may result in new treatments for myotonic dystrophy, and
one day, a cure; and

WHEREAS, It is imperative that there be greater awareness of this
serious health condition, and more must be done to increase activity at
the local, state and national levels; now, therefore, be it

RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim September 15, 2022, as
Myotonic 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.