| R 253 |
| 2025 -- H 6294 Enacted 05/01/2025 |
| H O U S E R E S O L U T I O N |
| PROCLAIMING THE MONTH OF MAY OF 2025 TO BE “MYOSITIS AWARENESS MONTH IN THE STATE OF RHODE ISLAND” |
Introduced By: Representatives Shanley, Shekarchi, Blazejewski, Chippendale, Paplauskas, Kazarian, Batista, Phillips, O'Brien, and Dawson |
| Date Introduced: May 01, 2025 |
| WHEREAS, Residents of the State of Rhode Island are among those affected by myositis |
| and other rare diseases, because nearly one in ten Americans are afflicted with a rare disease; and |
| WHEREAS, Idiopathic inflammatory myopathies (collectively referred to as Myositis) |
| are rare, chronic, autoimmune muscle wasting diseases associated with morbidity, significant |
| disability, and impacts lungs and other organs; and |
| WHEREAS, More research is needed to identify the causes of and modes of treatment for |
| the myositis group of diseases, which includes anti-MDS5 autoantibody positive myositis; |
| antisynthetase syndrome; dermatomyositis; juvenile dermatomyositis; immune-mediated |
| necrotizing myopathy; inclusion body myositis; and polymyositis; and |
| WHEREAS, Myositis is difficult to diagnose, treatment is often delayed, and individuals |
| generally experience difficulty finding a health care provider with expertise in their condition; |
| and |
| WHEREAS, All who suffer with myositis experience reduced quality of life, especially |
| as no cure has been found and life expectancy is shortened, especially for those with inclusion |
| body myositis and, women and people of color with all forms of myositis experience particularly |
| pronounced health disparities; and |
| WHEREAS, The Myositis Association (TMA) is the leading international patient |
| advocacy organization serving the myositis community, focusing on patient services, education, |
| research, and public awareness, so as to achieve a world without myositis; now, therefore be it |
| RESOLVED, That this House of Representatives of the State of Rhode Island hereby |
| proclaims the Month of May of 2025 to be “Myositis Awareness Month in the State of Rhode |
| Island”. We furthermore encourage all Rhode Islanders to come together to learn more about all |
| the forms of Myositis and its symptoms, and to support the families in our community who will |
| benefit from greater awareness of these rare diseases; and be it further |
| RESOLVED, That the Secretary of State be and hereby is authorized and directed to |
| transmit a duly certified copy of this resolution to Ms. Paula Eichenbrenner, Executive Director |
| of the Myositis Association, and Ms. Courtney Smith. |
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| LC002482 |
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