CF FamilyCon, Informative Get-together, Runs Friday and Saturday

Free and online, Oct. 21-22 event by CF Foundation for patients, family and friends

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by Mary Chapman |

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The Cystic Fibrosis Foundation (CFF) opens its fourth CF FamilyCon this week, a virtual two-day free event that gives cystic fibrosis (CF) patients and their family members, caregivers, and friends an opportunity to connect, learn, and share stories of life with the genetic disorder.

The Oct. 21–22 event will include keynote presentations, small-group discussions, panels, and social opportunities. Registration is required and each session notes its intended audience, from parents of teenagers with CF to spouses, and staying organized while dealing with CF.

The online event is open to those age 16 or older. Registration by teenagers under age 18 requires parent or guardian authorization. Registration for this young group closes on Thursday, Oct. 20, at 12 p.m. ET.

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Speakers and facilitators will include people with cystic fibrosis, relatives of patients, dietitians, and a CF physiotherapist.

The event kicks off on Friday, Oct. 21, at 6 p.m. ET with hourlong “welcome lounges” in which patients, family members, caregivers, and friends can chat and socialize.

A virtual photo booth, which allows multiple users to take pictures with custom backgrounds and animated stickers, will be offered during these lounges.

Next up is the opening keynote presentation, “The CF Family: We’re All in This Together,” underscoring the significance of community connections.

At 8:15 p.m. ET, three simultaneous hourlong and small-group discussions — two in English and one in Spanish — will take place.

The English-language sessions are titled “Speaking Up: How to Effectively Work with Your CF Care Team” discussion, meant for adults with CF, their parents/caregivers, and spouses/partners, and the “Providing Support to Those You Love” session, intended for caregivers, relatives, and friends of CF patients.

In the Spanish-language session, “Comparta historias y discuta aspectos únicos de vivir o amar a alguien con FQ con otros en la comunidade,” attendees will be invited to share their stories and the unique aspects of living with or loving someone with CF.

At the same time, a panel discussion intended for parents/caregivers, adults with CF, and their spouses or partners will cover “Managing the Chaos: Tips and Tricks for Staying Organized with CF.”

Saturday’s lineup begins at 2 p.m. ET with several simultaneous sessions running until 3 p.m.

Participants can have one-on-one, five-minute video conversations with randomly selected attendees, learn about various CFF programs at the Expo Booth, and share stories of togetherness, community support, and connection in the “Story Telling” session.

They can also join a panel discussion with four adults with CF, titled “Ask Me Anything: Adults with CF.” This discussion is meant for newly or recently patients and their families, caregivers and friends.

These events will be followed at 3:15 p.m. by three simultaneous, one-hour sessions. The panel discussion is titled “Nutrition Across the Lifespan: The Ebb and Flow of CF Nutritional Needs,” and the two small-group discussions are “The New Way of Planning for the Future with CF,” and “You’re Not Alone: Dealing with CF Guilt and Loss.”

Between 4:30 p.m. and 5:30 p.m., there will be the panel discussion “Finding My Fight: How CF Challenges and Motivates Me,” and two small-group discussion sessions: “Speaking Up: How to Effectively Work with Your CF Care Team,” and “Can’t Benefit from a Modulator … How Are You?”

The modulator session is divided in two discussions: one focused on patients not eligible for CFTR modulators — a specialized class of CF therapies for people with given mutations that address the disease’s underlying cause — and the other on those who stopped treatment due to medical reasons or lack of efficacy.

“This is What CF Looks Like,” the closing keynote address, runs from 5:40 p.m. to 6 p. m. ET, and features individual stories to emphasize that every patient’s journey is different.

It is followed by two final events, both running from 6:05 p.m. to 7 p.m. In the session “Get Your Game On: Finding Connections Through Gaming,” a panel will discuss the benefits of online activities and virtual gaming for people with CF and how family and friends “can join in on the virtual fun.” The other session is a mix of wellness activities: a journaling workshop of simple stretches and breathing exercises before guided writing, a self-care workshop focused on better integrating self-care into daily routines that concludes with light yoga, and a “gaming wellness” panel discussion.

Anyone with questions about CF FamilyCon or its events can raise them in an email to [email protected]

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