2024 -- S 3049

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LC006040

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     STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 2024

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S E N A T E   R E S O L U T I O N

COMMEMORATING "NATIONAL OSTEOGENESIS IMPERFECTA AWARENESS WEEK"

ON MAY 4 - 11, 2024

     Introduced By: Senators Britto, and Lawson

     Date Introduced: May 03, 2024

     Referred To: Placed on the Senate Consent Calendar

     WHEREAS, National OI Awareness Week is a time to raise awareness for Osteogenesis

Imperfecta and a time for those living with OI to share their "Unbreakable Spirit." The week is

centered around "Wishbone Day" on May 6, which is the International OI Awareness Day; and

     WHEREAS, Osteogenesis Imperfecta is a rare and complex genetic disorder that anyone

can be born with; however, people with a family history of the disease are at greater risk of

inheriting the disease through an abnormal gene that is passed on from one or both parents; and

     WHEREAS, OI is caused by a change in one's collagen which is the major protein

present in bone, and which causes the bones to break easily. This mutation affects bone

composition, formation, and strength, as well as the structure of other tissues; and

     WHEREAS, While brittle bones are the major feature of OI, many other body systems

may be affected including dental issues, hearing loss, muscle weakness, cardiac and respiratory

issues; and

     WHEREAS, Infants who have recognizable OI at birth make up about 1 in every 16,000

to 20,000 births. The incidence rate is similar in people with milder forms of OI that become

apparent later in life; and

     WHEREAS, OI affects all genders, races and ethnic groups equally and a person who is

born with OI is affected throughout his or her lifetime; and

     WHEREAS, In the United States, an estimated 25,000 to 50,000 people have the

condition; and

     WHEREAS, There is no cure for OI. Treatment focuses on minimizing fractures, the

surgical correction of deformity, reducing bone fragility, and maximizing mobility and

independent function; and

     WHEREAS, The purpose of OI Awareness Day is to improve the quality of life for those

living with OI through research, and by fostering support, raising awareness, and providing vital

information to our communities, medical professionals and caregivers; now, therefore be it

     RESOLVED, That this Senate of the State of Rhode Island hereby commemorates

"National Osteogenesis Imperfecta Awareness Week" on May 4 – 11, 2024, and urges all Rhode

Islanders to join together to bring awareness and focus attention on this rare disorder; and be it

further

     RESOLVED, That the Secretary of State be and hereby is authorized and directed to

transmit duly certified copies of this resolution to the RI Department of Health, Susan Kortick,

RN, Group Coordinator for the OI RI Support Group, and Chris Partington.

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