United States Adult Cystic Fibrosis Association, Inc (USACFA) just released the Summer 2018 edition of the CF Roundtable quarterly newsletter. In the past, we have provided a PDF version of the newsletter through our website; however, we have been advised by USACFA that this method of sharing the content may have a negative effect on their revenues. Starting with this announcement, we will provide the link where you can download the newsletter or read it on line.
- You can download the current (and prior) issues here: http://www.cfroundtable.com/newsletter/order-back-issues/
- You can read issues on line here: http://www.cfroundtable.com/online-newsletters/
The contents of the current issue are described in the Editor’s Comments which are presented below.
Summer is here. Hooray! I am ready for some warm weather and blue skies. I hope that your weather is pleasant, too.
We welcome Beth Sufian as the new Vice President. Meranda Honaker, Lauren Jones Hunsaker and Brennan Reeves have left the Board of Directors. We thank them for their service and wish them well.
I hope you have read the front page. Amy Sylvis, with the assistance of John Mercer and Drucy Borowitz, M.D., have made a major accomplishment.
Because of that we will be able to access presentations at the North American CF Conference. We thank the CFF for accepting us (adults who have CF) as an important part of CF care.
Our Focus topic is: What Is Most Important To You When A Disaster Strikes? Jeanie Hanley talks about earthquakes in California, where she lives. Nicole Matthews talks about blizzards in the part of New York near Buffalo. In “Speeding Past 50” I continue the theme with talk of wildfires and being ready to “go.”
Julie Desch writes of mindfulness and CF in “Wellness.” In “Spirit Medicine” Isabel Stenzel Byrnes talks of making comparisons. Amy Sylvis uses “Voices From The Roundtable” to discuss a diagnosis of CF-related diabetes and how it impacts our CF health. In “Transplant Talk” Andrea Eisenman tells of having another diagnosis added to all that she already has.
“Ask The Attorney” finds Beth Sufian discussing COBRA and how income can affect SSI and SSDI benefits. Brad Johns tells of a personal experience in “Clinical Trials.” Surrogacy is the theme of “Family Matters” by Molly Pam. John Mercer explains about making changes in career and job selections in “Financial Matters.” Once again, Laura Tillman has done a great job of gathering “Information From The Internet.” Colleen Adamson was a Director of USACFA and served as
Treasurer for a long time. We are happy that she is the subject of “In The Spotlight.”
If you are looking for a speaker for a fundraiser or education day, please check out the info on page 5 about getting a speaker from USACFA.
As always, we thank everyone who has made a donation to USACFA. Every little bit helps. We appreciate the support. See the president’s thank you on page 26.
I had to do a lot of thinking to write my column (“Speeding Past 50”) in this issue. Much of it is stuff that I take for granted. To actually sit down and list all of it was a good exercise for me. I hope that each of you will do something similar for your disaster preparedness plans. It is extremely important that each of us, even those who don’t have CF, has a good and workable plan for when a disaster strikes.
Stay healthy and happy,