SR 83 — A resolution to recognize October 23, 2025, as PURA Syndrome Awareness Day.

SR-83,MICHIGAN As Adopted by Senate, October 23, 2025 SENATE RESOLUTIONSenate NO.Resolution No.

83 Offered by Senators Nesbitt and Theis offeredA RESOLUTION TO RECOGNIZE OCTOBER 23, 2025, AS PURA SYNDROME AWARENESS DAY WHEREAS, PURA syndrome is a rare neurodevelopmental disorder caused by genetic alterations in the followingPurine-Rich resolution:Element Binding Protein A gene, which plays a critical role in brain development and cellular function;

Aand resolutionWHEREAS, toIndividuals recognizeaffected Octoberby 23,PURA 2025,syndrome asoften PURAexperience Syndromesignificant Awarenessdevelopmental Day.delays, intellectual disabilities, hypotonia, feeding difficulties, and seizures, with many remaining non-verbal and facing lifelong challenges;

Whereas,and WHEREAS, PURA syndrome iswas afirst rareidentified neurodevelopmentalin disordermedical causedliterature byin genetic2014, alterationsand inalthough thefewer Purine-Richthan Element1,000 Bindingcases Proteinhave Abeen gene,diagnosed whichworldwide, playsincreased aaccess criticalto rolegenetic intesting brainis developmentexpected andto cellularlead function;to more diagnoses;

and Whereas,WHEREAS, IndividualsFamilies affected by PURA syndrome oftendemonstrate experienceextraordinary significantresilience developmentaland delays,advocacy, intellectualworking disabilities,to hypotonia,provide feedingvital difficulties,support, education, and seizures,funding withfor manyresearch remainingto non-verbalimprove andthe facingquality lifelongof challenges;life of those affected;

and Whereas,WHEREAS, Raising awareness of PURA syndrome wasis firstessential identifiedto inpromoting medicalearly literaturediagnosis, inadvancing 2014,research, and althoughfostering fewerinclusive thancommunities 1,000that casessupport haveindividuals beenwith diagnosedrare worldwide,diseases; increased access to genetic testing is expected to lead to more diagnoses;

and PURA_SR83_AA_1WHEREAS, 6hb3jgAdvocacy 1groups Whereas,and Familiesfamilies affectedhave bydesignated PURAOctober syndrome23rd demonstrateas extraordinaryPURA Syndrome resilienceAwareness andDay advocacy, working to providehonor vitalthose support,affected education, and funding for research to improveencourage thepublic qualityeducation ofand lifesupport; of those affected;

andnow, Whereas,therefore, Raisingbe awarenessit ofRESOLVED PURABY syndromeTHE isSENATE,That essentialthe tomembers promotingof earlythis diagnosis,legislative advancingbody research,recognize andOctober fostering23, inclusive2025, communitiesas thatPURA supportSyndrome individualsAwareness withDay; rare diseases;

and Whereas,be Advocacyit groupsfurther andRESOLVED, familiesThat havewe designatedencourage Octoberall 23rdcitizens asto PURAlearn Syndromemore Awarenessabout DayPURA tosyndrome, honorsupport those affected families, and topromote encourageawareness publicof educationrare anddiseases. support;

now,Adopted therefore, be it Resolved by the Senate, That the members of this legislative body recognize October 23, 2025,2025. as PURA Syndrome Awareness Day;

andSecretary be it further Resolved, That we encourage all citizens to learn more about PURA syndrome, support affected families, and promote awareness of rarethe diseases.Senate

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