Hope is a journey….come join me!
Stefani Bush is a “rare and complex” patient and parent of 2 “rare and complex” children. She has dedicated most of her adult life to serving and helping others, starting when she was in her early 20s as a guardianship advocate and EMT. Having navigated the intricate and sometimes confusing medical maze as a patient, parent, and former medical professional, Stefani has the unique perspective of being able to see all sides of this kind of journey. Her mission is to help providers, patients, and their families be courageous with their complex care in order to improve outcomes and relationships within the teams with which they work.
Stefani has an extensive background in fundraising and team building both on a local and national front.
She was the founder and co-leader of Team Hope – a local chapter of the Immune Deficiency Foundation (IDF) for 7 years before she and her family moved to Florida in 2014. She was the Vice President and then President of the New England Chapter for the United Mitochondrial Disease Foundation (UMDF) for 2 years but remained active within the community for 3 more years. During her time with the IDF and UMDF, Stefani was in charge of planning and executing patient education meetings, fundraisers, blood drives, chapter meetings, spearheaded legislative efforts, and was a peer advocate for patients with Mitochondrial Disease and Primary Immunodeficiency Disease. In 2009, Stefani was recognized as Fundraiser of the Year for the Immune Deficiency Foundation (a distinction only handed out every 2 years).
Between the 2 organizations, Stefani has helped run 6 Beer & Wine Tasting/Charity Auctions, 1 large scale music benefit, 1 walk, and several other smaller fundraisers totaling over $100,000.00.
Stefani has spoken at state conferences, patient conferences, Harvard, churches, and Biotest Plasma Center’s national meeting.
Stefani was also very active within her local community in MA. She was a town meeting representative, a member of the disabilities commission, co-chair of a successful political grass-roots organization, and co-chair of a large scale Fire-Relief effort. Her fundraising efforts within her town totaled over $35,000.00 in just 2 years alone prior to her move to Florida.
In 2012, Stefani was recognized as one of the ‘Top 50 Most Inspirational Women in the Region’ from the Mill Era (1840’s) to Present.’ In December 2013, Stefani was recognized as a Citizen of the Year for her hometown for all of her efforts on the political, community, arts (music), legislative, and national fronts.
Stefani’s passion and commitment to finding positive and creative ways to bridge the gap between patient and provider has driven her to create Courageous Care with the mission of fostering connection, coordination, and compassionate care for the medically rare and complex. Stay tuned for the imminent launch of Courageous Care!!!