Lynn Crisci
Patient Advocate @National Organization for Rare Disorders
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WORK HISTORY
Patient Advocate @National Organization for Rare Disorders
Boston, MA, US
I volunteer, as a Patient Advocate, for the NORD, the RDLA, and the Everylife foundation for rare diseases. My duties include, but may not be limited to: write articles; speeches, and presentations; interviews; lead meetings with senators and representatives; social media promotions; sign petitions; etc.
EDUCATION
American Migraine Foundation
Emerging Advocates Program Certificate, Migraine Disease
University of Maine
Jazz & Contemporary Music, Contemporary Music
Annual College of Surgeons
Community Health and Preventive Medicine
UMass Boston
Bachelor of Arts (B.A.), Theater Arts
Boston Trauma Response Team
Community Health and Preventive Medicine
Ehlers Danlos Society
Patient Advocate: EDS ECHO, Ehlers Danlos syndrome
University of Maine
General Science, Science, Psychology & Sociology
American Heart Association
CPR Jr Instructor, Community Health and Preventive Medicine
Everylife Foundation
Rare Advocacy Learning Program Certificate, Rare Disease Legislative Advocacy
US Pain Foundation
Virtual Advocacy Training Program Certification, Patient Advocacy
Health Union
Patient Leader Certification Certificate, Patient Advocate
SKILLS
ABOUT LYNN CRISCI
Award-Winning Speaker, Author, Consultant, Ambassador, Patient Advocate, Boston Actress, Pop Superhero and Boston Marathon bombing survivor: I love to network… Let’s connect!@LynnJulian007HIRE ME as a Featured Speaker on these topics:“The Secret To Resilience.”“Chronic Pain Treatments”https://youtube.com/playlist?list=PL8cZDjpxZ27xIHUAfdnOCkznrKzXyXWyZLynn Julian wears many hats: Survivor (Boston Marathon Bombing, 4/15/13); Speaker; Patient Consultant; Author in 9 books & 100s of articles (Linkedin.com/in/lynnjulian); National Disability and Medical Advocate for brain injury, migraine, PTSD, Lyme disease and Rare Disorders; Boston Actress (BostonActress.org); Pop Superhero on 30+ CDs & Rolling Stone (PopSuperhero.com); SEO Consultant.I am a “patient experience consultant” with corporations, foundations, researchers, politicians, and international leaders to form an accurate understanding of chronic illness, rare disease, and life with disability.Strength To Strength, StoSglobal.orgTerrorism Survivor Advisory BoardUS Pain Foundation, USPain.org Massachusetts AmbassadorHealth Union, HealthUnion.orgWriter/Admin/Consultant/Migraine ExpertRare Disease Legislative AdvocateEverylifeFoundation.orgRDLA Team LeaderLyme Disease, CenterForLymeAction.orgCongressional Meeting Group LeaderBrain Injury Assoc. of Americabiausa.org, TBI Patient Advocatehearinghealthfoundation.orgHearing Loss Patient ConsultantLeaftopia, DispensaryLocation.comDirector of Patient Julian lives with brain/back/neck injury; chronic migraine; Fibromyalgia; Dysautonomia; hearing loss; tinnitus; hyperacusis; arthritis; Long COVID) and 9 rare conditions (Ehlers Danlos Syndrome; Mast Cell Disease; Craniocervical Instability; SUNCT Headaches.)A disabling stage accident left Lynn Julian in a wheelchair, learning to walk again, for 6 years, until she repurposed her talents as an actress in regional films. Mere months later, on 41•••13, Lynn became an injured survivor of the Boston Marathon Bombing, with brain/neck/back injury, permanent, hearing loss, severe PTSD, and a renewed sense of purpose: running the 2014 Boston marathon. She is now a Featured Speaker, author, consultant, patient advocate, activist and actress.Lynn and her Service Dog, Dr. Smallz, find purpose in helping others and hope to inspire us to never give up.\"I went from wheelchair, to walking again, to running the Boston Marathon. Connect with me for strength through unity. Together, we can achieve anything!\"Instagram.com/Lynnjulian007Facebook.com/PopSuperhero
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