User:LillyGrossman97/sandbox
Lilly Grossman is a Rare Disease advocate born on February 19, 1997, in Lakewood, Ohio.
Lilly was the first person diagnosed through whole genome sequencing at Scripps Translational Sciences Institute. In 2013, she was patient number one in the IDIOM study; Idiopathic Diseases of Man. [1] [2] [3]
After being undiagnosed and misdiagnosed for 15 years, Lilly was the first one in the world diagnosed with her condition as well as the first one diagnosed through whole genome sequencing at Scripps Translational Sciences Institute. Lilly's diagnosis led to the disease being renamed as ADCY5-related dyskinesia from ADCY5-facial dyskinesia. [4]
ADCY5-related dyskinesia is a movement disorder affecting her physically, not cognitively. [5]
In high school, Lilly earned her Girl Scout Gold Award for implementing a safety plan that incorporated her high school’s disabled students and a way to evacuate them off the second floor in the event of an emergency. She made sure her college, Whittier College, did the same. [6] [7] [8]
In 2013, she authored "The Girl They Thought They Never Knew." She received an Honorable mention from The White House Student Film Festival in 2014 when she made a short film, 'How I Use Technology in School'. [9] [10] [11]
In college, Lilly wrote the coloring book entitled “We Are All Rare.” The book educates elementary school children and also their families, teachers, and school staff about rare diseases and the differences each one of us contributes to our world. [12] [13]
Lilly is an alumna of Whittier College, where she earned her Bachelor of Arts majoring in Political Science and minoring in English. There she served on student government, was an active member of the Athenian Society, and was a cheerleader for football and basketball. [14] [15]
Lilly is currently enrolled in CUNY Master's Program studying Disability Studies.
- ^ https://www.scripps.edu/science-and-medicine/translational-institute/translational-research/genomic-medicine/idiom/index.html
- ^ https://www.sandiegouniontribune.com/news/science/sdut-genome-genetics-dna-topol-sequence-2013mar09-story.html
- ^ https://www.latimes.com/local/la-me-c1-0120-lilly-grossman-genome-pictures-photogallery.html
- ^ https://www.nationalgeographic.com/science/phenomena/2013/03/11/we-gained-hope-the-story-of-lilly-grossmans-genome/
- ^ https://ghr.nlm.nih.gov/condition/adcy5-related-dyskinesia
- ^ https://www.lajollalight.com/sdljl-three-la-jollans-earn-girl-scout-gold-awards-2014jun27-story.html
- ^ https://www.theatlantic.com/science/archive/2015/09/how-genome-sequencing-gave-lilly-grossman-an-answer-a-future-and-a-community/406345/
- ^ http://www.medsled.com/student-with-mobile-disability-implements-sustainable-evacuation-plan-at-san-diego-area-high-school/
- ^ https://www.youtube.com/watch?v=hCkjkm6YMCk
- ^ https://www.kpbs.org/news/2014/apr/01/genomic-sequencing-provides-hope-la-jolla-girl/
- ^ https://www.lajollalight.com/sdljl-la-jolla-teen-honored-at-white-house-film-fest-2014mar13-story.html
- ^ https://www.coloringbook.com/we-are-all-rare.aspx
- ^ https://www.scripps.org/news_items/5352-l-a-times-publishes-update-on-scripps-study-participant
- ^ https://www.whittier.edu/news/mon-05202019-1038-am/2019-senior-profile-lilly-grossman
- ^ https://www.today.com/parents/medical-advances-give-hope-children-rare-diseases-t127693