Tony Jacobsen
"Feeling accomplished! I hosted my monthly #OILife GROUP community Zoom call on Wednesday, and it was a huge success! The topic was necessary, and many questions were answered."
, that is awesome, and we're glad you're here to share your journey! What you are doing is very important work.
My sister had Type 2, sadly, when I was just over a year. I never met her, but I have been deeply connected with her for my whole life (66 years). - Warmly, Donna (Team Member)Doing my best to bring the community together and spread awareness. It's such a rare disorder. What type of OI did your sister have? , that is wonderful, thank you!My younger sister had OI. There is a lot of ignorance around it. - Warmly, Donna (Team Member) Thank you for asking. I set up the OILife Group to fill a gap in support for the Osteogenesis Imperfecta community. I hold a monthly virtual meeting! Hello! Yes, this monthly virtual support meeting is dedicated to the Osteogenesis Imperfecta (O.I.) community. We had a meeting focused on 'Aging Well with O.I.," and it was a lively discussion. I think this is an important topic for any rare disease community to have. that is amazing & I am so happy to hear that it went so well! Do you mind me asking what this particular group is?