Claire 4 Rare Meets Kelly & Kiley Andrasco
April 20, 20222023 Research Applications Now Open!
October 17, 2022October 18, 2022
1:00-2:30 PM CT
The Mellowes Center, Mayo Clinic, and Children’s Wisconsin are proud partners of Harmony 4 Hope, a nonprofit synthesizing stories, songs, and science to educate, empower, and fuel Rare Disease research.
Taylor Kane
Harmony 4 Hope Rare Storyteller
Taylor Kane has spent most of her life as a rare disease advocate. She is the founder and executive director of Remember The Girls, an international non-profit organization that unites, educates and empowers female carriers of X-linked genetic disorders. Taylor’s activism began when she was in grade school, shortly after her father died from the rare X-linked disorder Adrenoleukodystrophy (ALD) and she learned that she was a carrier of this devastating disease. Not only did Taylor help raise substantial money for ALD research, she successfully lobbied the New Jersey legislature and Governor to enact a law requiring the screening of newborns for ALD in New Jersey. At the age of fourteen, Taylor founded a campaign called YAC (Young ALD Carriers) to support young females who carry the gene for ALD and to assist them in effectuating positive change through advocacy, social media, and the legislative process. Since college, she has served as a leader of the Young Adult Representatives of the Rare Disease Legislative Advocates (YARR), educating young adults with rare diseases to advocate for more affordable, safe, and effective treatments. Taylor is a summa cum laude graduate of The George Washington University who resides in New Jersey, but spends several months each year in the United Kingdom. She is an award-winning activist, an accomplished speaker, and a respected author, having recently published a memoir, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease.
Cameron James
Harmony 4 Hope Musical Ambassador
Cameron James is a pop artist and songwriter based in Nashville, TN.
Her songs have been used internationally in Poland, China and the UK.
She’s had recent placements in ‘Selling the OC,’ ‘The Hills,’ And ‘Forever Summer:The Hamptons
Her songs ‘Game Changer’ and ‘You Can Do Anything’ have been used in tens of thousands of reels on Instagram.
In addition to her artistry, Cameron’s songwriting accolades include co-writing Danny Gokey’s single “The Comeback” on his GRAMMY® nominated album “Rise.” “The Comeback” peaked at #6 and spent over 20 weeks in the top 10 on Billboard’s Christian radio chart. She received a BMI award for cowriting “The Comeback” which was one of the most performed songs of the year in the Christian radio format. She also cowrote Danny Gokey’s song “Undertow” on his most recent album, “Haven’t Seen It Yet.” Her other collaborations involve writing and recording with talented artists and writers from across the musical spectrum.
Cameron is also a lobbyist, speaker, and advocate within the rare disease community. Her husband and daughter both have the ultra rare disease Atypical Hemolytic Uremic Syndrome (aHUS). Her family’s journey has undoubtedly inspired her art and she loves encouraging others with her family’s inspiring story.
Margot A. Cousin, Ph.D.
Associate Consultant, Center of Individualized Medicine, Mayo Clinic
Harmony 4 Hope Scientific Guest
Dr. Margot A. Cousin is an Associate Consultant in the Center Individualized Medicine in the Department of Molecular Medicine at Mayo Clinic. Her current research focuses on individualized therapeutic approaches for patients with rare genetic disorders. Dr. Cousin earned her Ph.D. in Clinical and Translational Science from Mayo Clinic Graduate School of Biomedical Science and completed her postdoctoral training in rare genetic disease diagnostics in the Translational Omics Program in the Center for Individualized Medicine at Mayo Clinic.
In this talk, Dr. Cousin will introduce X-linked genetic disorders and how collaborative clinical and research investigations were able to determine the genetic diagnosis of an X-linked disorder in a girl with a neurodevelopmental syndrome.
Rare Storytellers is a division of Harmony 4 Hope created for the purpose of educating on Rare Diseases through songs, stories and science. Rare Storytellers is a rapidly growing network of patients, musicians and medical professionals currently representing over 30 rare diseases.
Horizon Therapeutics