Bo and Daniel were deeply honored to to be presented with the first Rare Awareness Award from MassBio, Massachusetts General Hospital Frontotemporal Disorders Unit and NORD at the 2018 Rare Disease Day event last month.
The award sought to honor someone who is advancing the cause of all rare diseases.
Held at the UMass Club in Boston on Wednesday, February 28, the event aimed to raise awareness for rare disease and the research being done in Massachusetts to provide new treatments and cures. The room at the UMass Club was set up with chairs for 350 people but over 500 attended.
Speakers included:
Representative Brian M. Ashe, Massachusetts House of Representatives
Katie Brandt, Director of Caregiver Support Services, Frontotemporal Disorders Unit,
Massachusetts General Hospital (Emcee)
Bo Bigelow & Daniel DeFabio, co-founders, DISORDER, The Rare Disease Film Festival
Michelle Hirsch Donovan, mother of a child with Neurofibromatosis, type 1 (NF1)
Richard P. Kennedy, President, The Angel Fund for ALS Research
Jen Melanson, patient with Hypoparathyroidism and CTLA4 Haploinsufficiency
#PatientDriven
