Referred to: The Public Health and Social Services Committee (Chairman Lopez and

Legislators Allen, Belfiglio, Litts and Provenzano)

Legislator Kevin A. Roberts offers the following:

WHEREAS, Hereditary Hemorrhagic Telangiectasia (HHT), also known as

Osler-Weber-Rendu Syndrome, is a multi-organ manifestation characterized by

tangled blood vessels in the brain, lungs, liver, nose, skin, and intestines; and

WHEREAS, HHT is a common “rare” disorder affecting an estimated 1 in

5,000 people; and

WHEREAS, 90% of individuals with HHT experience moderate to severe

nosebleeds which are not yet diagnosed due to widespread lack of knowledge by

medical professionals; and

WHEREAS, HHT can result in stroke, hemorrhage, or heart failure; and

WHEREAS, HHT tragedies can be prevented through early diagnosis and

treatment; and

WHEREAS, by Resolution No. 251 dated and duly adopted on the date

hereof, the Ulster County Legislature proclaimed June 2015 As Hereditary

Hemorrhagic Telangiectasia (HHT) Awareness Month in Ulster County; and

WHEREAS, the HHT Diagnosis and Treatment Act HR 1849 was introduced

in the House of Representatives on April 16, 2015 as part of the 114th Congress; and

WHEREAS, HR 1849 would be the first to create a federally led and financed

initiative for early diagnoses and appropriate treatment of hereditary hemorrhagic

telangiectasia by requiring the Centers for Disease Control and Prevention to conduct

surveillance initiatives, start an internal HHT resource center and conduct public

awareness programs, and authorize the appropriation of $5 million per year for the

next five years to be used to improve early detection, screening, diagnosis and

treatment of HHT; now, therefore, be it

RESOLVED, that the Ulster County Legislature calls on United States

President Barack Obama, United States Senators Charles Schumer and Kirsten

Gillibrand, United States Representative Chris Gibson, to unite in creation of a

federally led and financed initiative for early diagnoses and appropriate treatment of

hereditary hemorrhagic telangiectasia through the passage of HR 1849 in the 114th

Congressional Session; and, be it further

RESOLVED, that the Clerk of the Ulster County Legislature shall forward

copies of this resolution to the President of the United States, to the President of the

Senate and the Speaker of the House of Representatives of the United States

Congress, United States Congressman Chris Gibson, United States Senator Kirsten

Gillibrand and United States Senator Charles Schumer, and Centers for Disease

Control Director, Dr. Tom Frieden; and, be it further

RESOLVED, that the Clerk of the Ulster County Legislature shall forward

copies of this resolution to New York State Governor Andrew Cuomo, New York

State Senators John Bonacic, William Larkin, James Seward, and George Amedore,

and Assemblymen Kevin Cahill, Peter Lopez, Frank Skartados and Claudia Tenney,

New York State Department of Health Commissioner, Dr. Howard Zucker,

and moves its adoption.

 ADOPTED BY THE FOLLOWING VOTE:

 AYES: 23 NOES: 0

Passed Committee: Public Health and Social Services Committee on June 1, 2015

FINANCIAL IMPACT:

NONE

STATE OF NEW YORK

 ss:

COUNTY OF ULSTER

I, the undersigned Clerk of the Legislature of the County of Ulster, hereby certify that the foregoing resolution is

the original resolution adopted by the Ulster County Legislature on the 16th Day of June in the year Two Thousand and

Fifteen, and said resolution shall remain on file in the office of said clerk.

IN WITNESS WHEREOF, I have hereunto set my hand and seal of the County of Ulster this 18th Day of June in

the year Two Thousand and Fifteen.

|s| Victoria A. Fabella

Victoria A. Fabella, Clerk

Ulster County Legislature