Senate Resolution No. 1644
BY: Senator MURRAY
MEMORIALIZING Governor Kathy Hochul to proclaim
July 2026, as MECP2 Duplication Syndrome Awareness
Month in the State of New York
WHEREAS, MECP2 duplication syndrome is usually caused by duplication
of DNA on the Xq28 region of the chromosomes; and
WHEREAS, Despite MECP2 duplication syndrome's being a
neurodevelopmental disorder, it causes multisystemic health problems,
such as severe gastrointestinal symptoms, frequent respiratory
infections, and treatment-resistant seizures; and
WHEREAS, Some individuals have large duplications which include many
other genes, and the full extent of phenotypes, due to duplication of
other genes, is not completely understood at this time; and
WHEREAS, Recent studies have shown a link between MECP2 duplication
syndrome and autism, and many with this syndrome do have distinct
features of autism; and
WHEREAS, Patients with MECP2 duplication syndrome are highly
responsive to proper stimulation such as education, exercise, music,
age-appropriate social interactions, and related activities; and
WHEREAS, MECP2 duplication syndrome can cause significant anxiety,
depression, and emotional exhaustion for caregivers; and
WHEREAS, MECP2 duplication syndrome was not formally recognized
until 2005; and
WHEREAS, MECP2 duplication syndrome research, which has shown that
symptoms of the disorder can be reversed in mice, using a small
anti-sense oligonucleotide, gives hope for the future development of
effective treatments for humans with this disorder; and
WHEREAS, Clinical readiness studies have been done to identify ways
to monitor response to therapy and ensure safety as a preparation for
future clinical trials; and
WHEREAS, Natural history studies are ongoing to define the natural
course of MECP2 duplication syndrome over the span of 12-18 months to
prepare for the start of clinical trials; now, therefore, be it
RESOLVED, That this Legislative Body pause in its deliberations to
memorialize Governor Kathy Hochul to proclaim July 2026, as MECP2
Duplication Syndrome Awareness Month 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.
