Speakers
Keynote: How CF Affects our Self-Worth & Expectations
Friday, Spetember 28 at 7:30 p.m. ET
Elizabeth Amber

Elizabeth Amber

Elizabeth Honan Amber is new to the CF Foundation but not new to CF. She was diagnosed at birth and lived in Alaska when she was a child. She has always been fascinated by how we tell our stories and loves reading biographies and memoirs as a result. She is self-taught, for the most part, having been home-schooled growing up. Some of the work she is most proud of is writing her own curriculum for a women's group she led for 3 years, and teaching herself to write and pursue art. She has been married for 13 years to her childhood friend and they have a cozy life in Alaska with their two cats Kairos and Pi. Elizabeth is currently on the transplant list waiting for 2 new lungs and a liver, and is living with her cousin in Washington while she waits.

 

Jack Burt

Jack Burt is a young professional and aviation executive that has been living with CF for the past 35 years. Jack is happily married to his wife, Amanda, has a 1 year old daughter named Nola May and a 5 year old prize Yellow Labrador Retriever named Thor. He has been active in the CF fundraising community in the past, participating in multiple Great Strides Events in the South Florida area as a member of the planning and advisory committees. Jack enjoys spending time with his family, golfing, boating, playing frisbee and travelling to new places.
Anna McVey-Tyson

 

Anna McVey-Tyson

Anna McVey-Tyson is a 32-year-old adult with CF hailing from Garden City, KS. She’s a single mom to two kids and happily co-parents with her ex-husband and his partner. She’s been a part of previous work groups for MiniCons, including the first CF FamilyCon in June 2018. When Anna isn’t working or spending time with her kids, you can find her bothering her cats, guzzling coffee, working on her proofreading business, or Skyping with friends. You can follow Anna on Facebook  or on Instagram @Iamannaangeli

Molly Pam

 

Molly Pam

Molly Pam is a 30 year old living with CF. She works as a chef in NYC, teaching cooking classes, catering, doing personal chef work, and making cakes for all occasions. She recently celebrated two years of marriage with her husband. Molly was diagnosed with CF at 10 and has a residual function mutation. In her free time she enjoys walking around NYC, traveling, gardening, and eating ice cream. Molly recently became a member of the CFF Adult Advisory Council and in 2018 chaired CF MiniCon: Sexual and Reproductive Health.
              Keynote Panel Discussion: Sharing Your Story: To Tell or Not to Tell
Saturday, September 29 at 2:30 p.m. ET
Linda Bowman
Linda Bowman has 56 years of experience living with CF. Her fighting spirit and sense of humor are her weapons of choice. For 25+ years, she has educated the community about CF and raises monies for research. Her Great Strides walk team; “Steady On” has been her life motto. Linda is Alum of the CF Adult Advisory Council, and serves on many committees with National, and on the local CF advisory board as Education/Outreach chair. She was the recipient of the 2017 Alex Award given by the CF Foundation. She was honored to be part of the first virtual events work group (BreatheCon) and in 2018 co-chaired the first ever CF FamilyCon. Linda is extremely passionate for children, nature and wildlife. She and her husband, Mike, live in Boca Raton, FL with their cats. She is in love with her family and friends and celebrates them every chance she can. You can follow Linda on Facebook, @LindaBowmanL on Twitter, and @lscrappybowman on Instagram
 
Caroline Burt
Caroline Burt
Caroline Burt is a 20-year-old college student from Palm Beach, FL. Having been diagnosed with CF at birth, Caroline has learned to appreciate life to the very fullest. Whether she's motivating underprivileged youth in her community or raising money for the CFF Palm Beach Chapter, Caroline is grateful for every opportunity to help the community, truly valuing the hidden blessings that have come with her Cystic Fibrosis. You can follow Caroline on @caroline_burt on Instagram, and @carolineburt277 on twitter.

 

Brian Devine

Brian Devine is a 43-year-old living with CF in Twin Falls, Idaho. He has been retired for 2 years now, as he gets closer to transplant. This June, he just celebrated 9 years of surviving Stage 2 cancer! Brian loves connecting with people in the CF community and is a peer mentor for the CF Foundation, and facilitates interactive peer groups for kids, teenagers and adults with Attain Health. In his free time Brian enjoys spending time with his amazing family and friends, riding his fat tire bike and taking his 1972 Gran Torino Sport muscle car to car shows.
 
Lauren Doane

Lauren Doane

Lauren Doane is a 24-year-old Cystic Fibrosis patient. She has served on the planning group for numerous Cystic Fibrosis Foundation virtual events and was honored to be nominated as a keynote panelist for BreatheCon 2018! Lauren has a passion for encouraging and uplifting those living with CF and their families. In addition, she has a passion for educating those who are unfamiliar with CF, she recently shared her story with her co-workers following an unexpected hospital stay in June. She hopes that through her story she can inspire others to overcome their obstacles and live life abundantly. Lauren lives in San Antonio, Texas, with her fiancé Michael and their two furbabies, Archie and Sadie. She enjoys spending her free time binge-watching How I Met Your Mother on Netflix and hanging out with her close family and friends. You can connect with Lauren on Instagram at @lauren.doane.
Keynote: Taking Care of Your Emotional and Mental Health
Saturday, September 29 at 5:00 p.m. ET

Stephanie Filigno, Ph.D.

Stephanie Filigno, PhD is a licensed clinical psychologist who earned her degree from the University of Nevada-Reno (UNR) in 2007. After earning her degree, Dr. Filigno moved to Cincinnati for a two-year National Institutes of Health-funded research fellowship focused on the promotion of nutritional health for young children with CF, where she was introduced to the early life experiences of individuals with CF and their families. Dr. Filigno is the first psychologist to be embedded into the pediatric CF care team, and since 2009 she has supported and fostered wellbeing for young adults with CF and helped families as they prepare for the adventures of infancy, school-age and adolescence. Dr. Filigno serves as her CF Center’s mental health coordinator, is the co-director of her CF Center’s Behavioral Health program, and is involved in the CF Foundation’s Mental Health Advisory Committee. She contributes to her CF Center’s transition program initiatives and conducts research to better understand psychosocial risk factors, school success, quality of life, and behavioral nutrition in CF. In her free time, she is in her happiest place when engaged in some combination of listening to music, cooking, traveling, and spending time with friends and family.
 

Chris Kvam

Chris was diagnosed with CF in 1984 at the age of 4. He is a spouse, father, an Assistant District Attorney, published author, and an athlete. Chris ran competitively through college and continues to use exercise to motivate his adherence to care. Chris has been an advocate for people with CF for many years. In addition to his personal fundraising efforts benefiting the CFF, he serves on his local CFF chapter board of directors and has been an event chair for Cycle for Life events for many years. He ran the 2013 NYC marathon for the Boomer Esiason Foundation. Additionally, Chris served as a member of the joint committee to establish mental health care guidelines for the CFF and European CF Society. He spoke at the 2014 North American Cystic Fibrosis Conference symposium presenting the recommendations of the guidelines committee, and he continues to serve on the CFF Mental Health Committee. Chris believes that living fully with CF requires the development of coping skills and an appreciation of the person with CF as a whole person, not as a patient defined by a condition. He views issues such as adherence to care, mental health, and the transition from pediatric to adult care settings just as important to improving the life experience of people with CF as are ongoing research and drug development.