Various resources that we’ve found helpful include:


  • Cystic Fibrosis: A Guide For Patient And Family by David M. Orenstein
    • This is an excellent medical resource. We have found it to be quite informative.
  • Alex, The Life of a Child by Frank Deford
    • A sad memoir of a young girl that died from CF in the early 1980s. Depressing reading, but, it opened my eyes to what we were dealing with when our daughter was first diagnosed with CF.
  • The Stones Applaud by Theresa Anne Mullin
    • A brave autobiography of an aspiring journalist. Theresa succumbed to CF in 1991 at 22 years of age. Theresa’s ambition and fearless approach to CF are motivating, despite the sad ending.
  • Breathing For A Living by Laura Rothenberg
    • Laura wrote this memoir as a documentary of her double lung transplant and her recovery, which she went through in her early 20s. Sadly, Laura’s story ended in her early 20s.

Note: I had to order most of the above-mentioned booked from (not .ca) because they weren’t available on the Canadian site.

If you have resources to add, please send me an email with the details at toddhdow [at]


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