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CF Roundtable – Autumn 2019

The Autumn 2019 issue of CF Roundtable has just been released by United States Adult Cystic Fibrosis Assn. As usual, the newletter is chock full of useful information. The Autumn issue is particularly timely since the focus topic is CFTR modulators.

You can access CF Roundtable in two formats. Just click the appropriate link below.

As usual, the Editor’s Notes gives you a good overview of the issues contents.

I’ve got big shoes to fill in the wake of Kathy’s retirement. Kathy spent 29 years helping create, craft, and shape both the newsletter we all love so dearly and USACFA as an organization. It’s such an honor and privilege taking over as Managing Editor and I’m immensely grateful for the team of deeply passionate and committed people at CF Roundtable who work tirelessly to not only support the cystic fibrosis community but evolve our role in that support.

Sadly, one of our former directors, instrumental in various columns, and secretary, Lisa Ann Cissell, passed away in August. You can read her obituary on page 44.

Our focus topic this issue features so many incredible voices and stories about experiences with gene modulators. Jeanie Hanley details all the changes in her body after starting a modulator. Several people write about their bittersweet relationship with the new CFTR modulators while Hannah Schau writes about modulators saving her from trans-plant. We also feature several articles about the overwhelmingly positive impact CFTR modulators have had for many people. Kathy Russell shares her experiences on Orkambi in her column “Speeding Past 50.” In her wellness column, Julie Desch discusses what’s on the horizon with the triple combo modulator in the drug pipeline.

In this issue, we announce both the re-launch of our Speakers Bureau program and the winners of our fall LMK scholarship, Sarah Salas and Alexandra Bannon. Beth Sufian answers questions regarding the ADA and FMLA in her column this month while Isabel Stenzel Byrnes talks about ambivalence in “Spirit Medicine.” Cindy Baldwin gives techniques for handling anxiety in children of CF parents in her column.

We’re excited to share several new columns with readers this issue. To accompany our focus topic, Aimee Lecointre lists several quick bite ideas for adding variety to fatty snacks needed for modulator drugs. Kat Porco writes about the differences between both types of diabetes and CFRD in her new CFRD Education column. One of our newest board members, Mark Tremblay, writes about substance abuse and depen-dency in his new column “CF: The Mind Game.”

We talk with both Lizzie and Bailey Gorman, two sisters with vastly different experiences with both CF and CFRD in our “In The Spotlight” feature. In “Voices From The Roundtable,” Jeff Rosenthal explains his triumphs and frustrations with the IVF process.

CF Roundtable couldn’t happen without the board of directors and the help, support, and commitment of everyone in the community, especially our donors. As we approach the end of 2019, we’d like to extend our sincerest gratitude for all of the financial contributions throughout the year. You can read about our year-end fundraiser as well. From all of us at CF Roundtable, we wish you all health and happiness in the upcoming holidays.

In the words of Effie Trinket in The Hunger Games, may the odds be ever in your favor, Sydna.

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