2025 -- H 6294

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LC002482

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     STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 2025

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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

     Referred To: House read and passed

     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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