Claire 4 Rare – Jenna Zeihen: Reigning Miss Kenosha with A Purpose
February 16, 20232024 Research Applications Now Open!
January 6, 2024April 11, 2023
1:00-2:30 PM CT
In partnership with the Mellowes Center, Mayo Clinic, and the Children’s Wisconsin, we’re working to advance education around Narrative Medicine and Pediatric Rheumatology.
Register here: https://mcw-edu.zoom.us/webinar/register/WN_kkEbYIT2SCSlcE8zvs3ISQ
In the spirit of synthesizing stories, songs and science to educate and bring awareness to the 7,000 Rare Diseases collectively impacting 350,000,000 people worldwide we warmly welcome to our stage: Brad Belliter, Dr. Aviya Lanis, Katherine Nagy and Dr. Donald Basel.
Please join us for what will be a harmonious, inspiring and uplifting educational experience like none other in the Rare Disease realm.
Thank you to our Event Sponsor Horizon Therapeutics!
Dr. Aviya Lanis
Pediatric Rheumatology Fellow, Seattle Children’s Hospital
Aviya Lanis, MD is a pediatrician currently in pediatric rheumatology fellowship training at Seattle Children’s Hospital. She earned her medical degree at the Alpert Medical School at Brown University in Providence, RI and completed her pediatrics residency at the Children’s Hospital at Montefiore in the Bronx, NY. Dr. Lanis is the founder and leader of the Narrative Medicine Workgroup affiliated with the Childhood Arthritis and Rheumatology Research Alliance (CARRA), a national organization focused on advancing research within pediatric rheumatology. She has spearheaded and published narrative medicine-based research initiatives bringing the narrative arts to patients and providers in the pediatric rheumatology realm. Dr. Lanis is passionate about narrative medicine as a therapeutic tool to address anxiety, depression and disconnectedness, particularly for patients with chronic illness. She is the recipient of several grants supporting her work, including funding through Harmony 4 Hope, Cure JM, and the University of Washington Housestaff Quality and Safety Committee. She has published numerous articles in the fields of juvenile dermatomyositis and chronic recurrent multifocal osteomyelitis, among others. Dr. Lanis has been recognized with a Resident Teaching Award and has been honored as a member of the Gold Humanism Honor Society and Sigma Xi Scientific Research Honor Society.
Brad Belliter
Parent Advocate
Loghan is 7 years old and lives with her mom, dad, and brother in Geneva, Illinois. Loghan was diagnosed with JIA in May 2018. After experiencing knee and ankle joint pain, she underwent extensive imaging and an I&D in April 2018. When testing was largely inconclusive, she was diagnosed with JIA. Initially, she was receiving local steroid injections to treat symptomatic pain but was transitioned to biologics in early spring of 2022 due to progression of disease. Loghan enjoys art, science, and dancing. She also enjoys many kinds of music. She starts almost every morning dancing and singing with her family and has recently started to write her own lyrics in her music journal. Loghan has never let her diagnosis define her and has been an inspiration to her friends and family through her continued positivity and resilience.
Katherine Nagy
H4H Musical Ambassador
Katherine Nagy is an Indianapolis based songwriter and performer. Her songs have been featured on Amazon Prime, Netflix and Bravo TV.
She performs regularly with her band in Indianapolis and other regional venues and music festivals. Her trio has opened for national touring artists Gabe Dixon and The Willy Porter Band.
She has released a full-length album “Heart songs” and multiple EP’s and singles. Her music is available on Spotify, iTunes, Amazon and more.
Originally from Ireland, she now lives in Indianapolis, IN with her husband, 3 children and the family dog, Bridget. Katherine is thrilled to be working with Harmony 4 Hope as a Musical Ambassador!
Dr. Donald Basel
Professor, Pediatrics, MCW Director of Genetics, Children’s Director, Center of Excellence-NORD Associate DIR, Undiagnosed and Rare Diseases GSPMC
Donald Basel, MD, is the Medical Director for the clinical genetics services at Children’s Hospital of Wisconsin. He is an Associate Professor at the Medical College of Wisconsin and Chief of the Division of Genetics within the Department of Pediatrics. He is the Associate Director for the Undiagnosed and Rare Disease Program within the Genome Sciences and Precision Medicine Center and additionally is the Director of the Medical Genetics Fellowship program. He completed his medical training at the University of Witwatersrand and a fellowship in Medical Genetics at the University of Cape Town, both in South Africa. He moved to America in 2001 where he worked as a research fellow at University of Connecticut Health Center, studying connective tissue disorders with a focus on fibrillin and collagen 1 as well as exploring the genetic etiology of limb developmental disorders. He repeated his Genetic and Pediatric training in Portland, Oregon, prior to joining the Medical College of Wisconsin in 2010 where he has continued to expand his interest in dysmorphology and phenotyping. In these roles he sees patients in a wide range of services including cancer, fetal medicine, skeletal dysplasia, connective tissue disorders, neurofibromatosis, and undiagnosed/rare diseases. He has a particular interest in tying phenotypes to underlying genetic pathways in the hopes of improving clinical diagnostics and the utility of genetic testing.
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