Lani Knutson, Advocacy Team LeaderFeb 28, 20221 minSo You’re Telling Me There’s A ChanceHappy Rare Disease Day! Started in 2008, Rare Disease Day is an international event focused on bringing awareness to the more than 7,000...
Cure CMDFeb 25, 20224 minAnnie Live!: My First-Hand Experience in a Television ProductionI remember the night I was asked to be a part of the production, I was so thrilled, I almost cried! I’ll never forget what one of my...
Rachel AlvarezFeb 24, 202211 minRare Disease Day Reflections: My Rare Disease JourneyExecutive Director Rachel Alvarez shares a deep dive into her history as a rare disease patient, and what it means to lead Cure CMD.
Terry SeluckyNov 9, 20212 minCure CMD Welcomes New Faces to the Board of Directors, Begins Transition for OthersCure CMD is fortunate to have a dedicated Board of Directors, many who have been on the organization's governance committee since its...
Lani Knutson, Advocacy Team LeaderOct 18, 20214 minAdrenaline HangoverWhen Michael woke up with a fever and sore throat last Monday, I assumed it was strep throat. This kid can get strep just by thinking...
Lani Knutson, Advocacy Team LeaderSep 14, 20213 minHow Much? How Little?Each fall, I email my sons’ teachers to give an overview of their Congenital Muscular Dystrophy (CMD). I explain the differences they can...
Rachel AlvarezSep 3, 20211 min2021 SciFam Content Now Available on YouTubeThanks to everyone who participated in our 2021 Virtual SciFam Conference. If you didn't get a chance to attend or watch recordings in...