When you think about cystic fibrosis, you probably think about the patient, and the parents who take care of them until they’re adults. But what about a patient’s spouse or partner? When a person starts dating someone with CF they probably don’t know the patient’s history, nor can they grasp the complications of the disease right away. A person with the disease has had a lifetime to get used to it. The same may be true of their parents. But for a partner, it is an entirely different story. In this podcast, meet the wonderful Megan Barker, the Director of Project CF Spouse. Her husband has CF. Rob Ronnenberg is in charge of the group’s strategic planning, and his wife has CF. I shared some tears with these two wonderful people; I am so glad to know them. Their foundation is off to a great start.
Translate Bio’s Chief Medical Officer, Dr. Ann Barbier was recently at the North American CF Conference where she talked to Laura Bonnell about the exciting work they’re doing for people with CF. Translate Bio, a leading biotechnology company, focuses on pioneering the translation of RNA science into therapeutics, promoting healthy gene expression in people living with debilitating genetic diseases.
We talked with Dr. Colleen Barry about everything from prior authorization, to the future of CSHCS, carved out drugs fee for service and how new drugs like Trikafta will be covered. You’ll be “in the know” after you listen to this podcast.
In this podcast Laura Bonnell talks with Dr. Ahmet Uluer of Boston Children’s Hospital and Brigham and Women’s CF center in Boston where he is the Adult Program Director. The Bonnell Foundation embraces Dr.Uluer ‘s love for the CF community, his time commitment to the CF community, along with his wealth of knowledge about CF that he shares with all of us so freely. We spoke at the North American Cystic Fibrosis Conference in Nashville, TN about a week after Trikafta was approved by the FDA (Oct. 21st, 2019).