I live in Minneapolis, MN with my husband Michael and our 15-year-old twins daughters (Elizabeth and Alanna.) When they were 12 years old they were diagnosed with NF2. Our daughters have each had significant NF2- related surgeries that has kept them healthy, for the time being. The diagnosis and prognosis, although terrifying, has made our world bigger and better by introducing us to incredible people we would have never met otherwise. We are blessed with an incredible care team at the University of Minnesota Masonic Children’s Hospital in Minneapolis. Mike and I are determined to help NF2 BioSolutions raise awareness and money for gene therapy research because it is so promising. We want to find a cure for NF2 so everyone diagnosed with NF2 – and the other rare diseases that would benefit from this cure – can live a full life of promise, hope and impact – without symptoms.
Contact me at Danette@nf2biosolutions.org
Phone: (651) 356 9829