Rare Storytellers 2017 Spring Series: The Best Songs Start with a Story

Photos Copyrighted by Cindy Cardinal Kennedy JUNE IS BATTEN DISEASE AWARENESS MONTH “Our Rare Storytellers Educational Series was ignited in 2015 with a visit to Feinberg School of Medicine educating on Batten Disease, CLN2 and has been steadily growing ever since. Bridget Kennicott and Batten Disease are the inspiration driving our mission for creating awareness for all Rare Diseases.” says Hughes, Founder of Harmony 4 Hope. Bridget Kennicott 2004-2017 Harmony 4 Hope Rare Storytellers Series is giving a voice to Rare Disease patients and parent advocates. A growing number of rare disease patients in the midwest are sharing their personal journeys with future physicians at Chicago’s finest medical institutions, including Northwestern’s Feinberg School of Medicine and Rush University Medical Center. This spring H4H launched their Rare Storytellers -Teen Chapter- welcoming their first young adult to the stage sharing his story with a Pediatric Interest Group at Feinberg School of Medicine. Peter Dankelson, of Libertyville and brainchild of Pete’s Diary, a movement to choose kindness, stepped up to the mic to share his lifelong medical challenges with Oculo-Auriculo Vertebral Spectrum (OAVS) or Goldenhar Syndrome. In Peter’s words, “I’ve been high maintenance and expensive my whole life and I rarely try to pronounce my rare disease, because my disease really doesn’t define who I am.” Peter’s story engaged and inspired a classroom full of students eager to learn from the patients themselves! March 9, Rush University Medical Center welcomed H4H back for their second round of Rare Storytellers, pulling on stage two new members to the Rare Storytellers Team, Sharon Rose, voice for Klippel-Feil Syndrome and Sue Rogers, voice for Focal Segmental Glomerulosclerosis. Harmony 4 Hope Rare Storytellers Educational Series is funded through industry sponsorship. To date Harmony 4 Hope has 12 Rare Storytellers on their team. For sponsorship opportunity and details, Please Visit: https://www.harmony4hope.org/sponsorship Please TUNE IN with Harmony 4 Hope on Facebook to See our Rare Storytellers Recorded LIVE. This program is Brought to you by Harmony 4 Hope and Made Possible by the Support of The Following: #BattenDisease #PetesDiary #GoldenharSyndrome #KlippelFeilSyndrome #focalsegmentalglomerulosclerosis #RushUniversityMedicalCenter #FeinbergSchoolofMedicine #Retrophin