Memorializing Governor Kathy Hochul to proclaim May 2026 as Neurofibromatosis Month in the State of New York

Assembly Resolution No. 1313

BY: M. of A. Rules (McDonald)

        MEMORIALIZING  Governor  Kathy  Hochul to proclaim
        May 2026 as Neurofibromatosis Month in the State  of
        New York

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

  WHEREAS,  This  Legislative  Body  is  justly  proud  to memorialize
Governor Kathy Hochul to proclaim May 2026 as Neurofibromatosis Month in
the State of New York, in conjunction with the  observance  of  National
Neurofibromatosis Month; and

  WHEREAS,  Neurofibromatosis  (NF),  a  debilitating  tumor disorder,
affects more than 130,000 Americans; and

  WHEREAS, Neurofibromatosis Northeast has worked for over 30 years on
its mission to find a cure for NF; and

  WHEREAS, With a mission to finding a  treatment  and  cure  for  NF,
Neurofibromatosis  Northeast  promotes  research,  creates awareness and
supports those who are affected by NF; and

  WHEREAS,  Growing  awareness  of  NF  has  resulted   in   increased
investment  in  research  through private charities such as NF Northeast
and the NF Research Program in  the  Department  of  Defense  which  has
resulted  in  new  clinical  trials involving application of drugs which
have been shown to reduce malignant tumors in cancer; and

  WHEREAS, In 2019, the FDA approved the use of Koselugo (selumetinib)
for treatment of NF1, and promising science using  combination  therapy,
gene  therapy  and  bacterial  therapy  has  led  to new clinical trials
offering hope for families dealing with the uncertainties of NF; and

  WHEREAS, Increased knowledge  of  NF  will  help  initiate  critical
research;  NF  patients  and  their  families  are  determined  to  make
Neurofibromatosis a household word; and

  WHEREAS, Proliferation of awareness  about  NF  has  helped  educate
clinicians  regarding  the  disease  and  treatment,  and  has  enhanced
opportunities for patients to receive treatment from knowledgeable local
clinicians such as Drs. Lauren Weintraub and Katharine Halligan  of  the
Melodies Center at Albany Medical Center; 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   May   2026   as
Neurofibromatosis 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.