National CF Education Day

[cflawyer]

Please join us for an amazing Education day on this Saturday. So many of the questions I see posted here will be answered on Saturday. We can have 1,000 people. The more people we have the bigger statement we make that these types of events are important to the CF community. Don't miss it!!

National Cystic Fibrosis Education Day

	Join us for a Webinar on December 7 Please join us for a free webinar on cystic fibrosis to be held on Saturday, December 7, 2013 from 9:00 am to 1:00 pm MT (8:00 am PT/10:00 am CT/11:00 am ET). This event is being co-sponsored by the American Thoracic Society (ATS), the Cystic Fibrosis Foundation, Children’s Hospital Colorado Pediatric Cystic Fibrosis Center and the National Jewish Cystic Fibrosis Adult Center. This education day is being held in conjunction with the “Cystic Fibrosis Week at the ATS” program — an educational activity designed to foster communications between clinicians, patients and patient advocates on lung and airway disorders such as cystic fibrosis. Co-chairs of the event are Beth Sufian, JD and Piper Beatty, JD. 9:00-9:10am Welcome from the ATS - Mr. Courtney White Welcome from the CF Foundation - Mary Dwight 9:10am- 9:45am The Future Looks Bright: An Update on the CF Foundation Drug Pipeline Speaker: Dr. Frank Accurso Children’s Hospital Colorado CF Center 9:45am- 10:15am Best Practices in the Care of Children with CF Speaker: Dr. Scott Sagel Director, Children’s Hospital Colorado CF Center 10:15am-11:00am Laws that Help People with CF: Social Security Benefits, Medicaid, Medicare, the Affordable Care Act and Education Laws Speaker: Beth Sufian, JD Director of the CF Legal Information Hotline Director of the CF Social Security Project 11:00am- 11:30am Best Practices in the Care of Adults with CF Speaker: Dr. Jerry Nick Director, National Jewish Health Adult CF Center 11:30am-11:45am Advocating for the CF Community Speaker: Mary Dwight CFF Vice President of Government Affairs 11:45am-12:00pm - Break/Lunch 12:00pm-12:25pm Transplant: Things a Person with CF Should Know Dr. Jennifer Taylor-Cousar National Jewish Health Adult CF Center Physician 12:25pm-12:45pm Transplant: A First Hand Account Speaker: Piper Beatty, JD Attorney and Lung Transplant Recipient 12:45pm-1:00pm A Parent’s Perspective: Hope, Love and CF Mike Beatty, JD CF Foundation National Board Member Title: National Cystic Fibrosis Education Day Date: Saturday, December 7, 2013 Time: 9:00 AM - 1:00 PM MST After registering you will receive a confirmation email containing information about joining the Webinar. System Requirements PC-based attendees Required: Windows® 8, 7, Vista, XP or 2003 Server Mac®-based attendees Required: Mac OS® X 10.6 or newer Mobile attendees Required: iPhone®, iPad®, Android™ phone or Android tablet Space is limited. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/145004640

Sincerely,

 

[Guest]

The program sounds great. I hope it will be recorded and made available for those who are unable to listen to it live, the same way the Cystic Fibrosis Foundation’s presentation titled 2013 Scientific Update was.

Saturday is the Jewish Sabbath. There are some of us who spend the morning in Synagogue. We also don’t, or would rather not, use the phone or computer on the Sabbath, even though this might be considered a matter of health.

I’m sure many of us will miss all or parts of the program for other reasons.

It would be great if everyone had the opportunity to hear the program in its entirety, or to rehear to some of the information they found interesting and may want to hear again.

 

[Guest]

I received this positive response response from Courtney White at thoracic.org.

"Yes the webinar will be recorded and archived on the websites of the American Thoracic Society as well as the CF Foundation. We usually have the archive ready a week or so after the live event. So check back with us then."