| R 257 |
| 2024 -- S 3049 Enacted 05/07/2024 |
| 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 |
| 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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| LC006040 |
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