Agenda DAY 1
Friday, September 28, 2018
6:30 - 7:30 p.m. ET
Check-in and Welcome
7:30 - 8:30 p.m. ET 
Keynote: How CF Affects our Self-Worth & Expectations

Societal expectations, self-expectations, measuring up… three people with cystic fibrosis openly share their intimate peaks and valleys in their search for true self-worth. This session will be followed by a live Q&A.

8:30 - 9:00 p.m. ET
Live Q&A with Keynote Speakers
9:00 - 10:00 p.m. ET
Happy Hour Mingle
Agenda DAY 2
Saturday, September 29, 2018
12:30 - 1:00 p.m. ET
Check-in and Optional Activity
Opening Activity: Ommmmmm - Meditation, Centeredness, and CF
Having CF is a stressful experience and it's easy to lose yourself in the struggle. There are many techniques that can help you achieve a more relaxed state. Start the day with Mindfulness-Based Stress Reduction (MBSR).
1:00 - 2:10 p.m. ET
Breakout Sessions Round 1
Click here for full breakout session descriptions
2:10 - 2:30 p.m. ET
2:30 - 3:30 p.m. ET 
Keynote Panel Discussion: Sharing Your Story: To Tell or Not to Tell?

We all have a story but deciding to share it is a very personal choice. Will it help me or others to tell? Is there value in not sharing?  What are the costs/benefits to either option?  Hear how our panelists explore this complex topic with vulnerability and honesty. 

3:30 - 4:30 p.m. ET
3:40 - 4:50 p.m. ET
Breakout Sessions Round 2
  • Free Writing and Journaling
    In this session we will be teaching another way to unearth--through free writing--what you are really feeling in relation to expectations and personal value. We will look at how to quiet your inner critic and let yourself just say what you need to say. You will not be required to read aloud what you write. Rather, this will be a safe space to dig deep and process feelings through journaling.
  • Panel Discussion: Dealing With Unexpected Transitions
    Panel Discussion with Q&A
    Life with CF can throw us curveballs, but good thing we know how to roll with the punches! Whether it’s fighting a lung infection that lands you in the hospital, being evaluated for a double lung transplant before you’re mentally ready, or having to resign from a job you love to focus on your health. In this panel discussion you'll hear from adults with CF who have walked these paths. They'll talk about the difficult transitions, what feelings they stir up, and the tools that propelled them through these times to come out on the other side stronger than ever!
  • Making Care Sustainable and Feeling Ruled by Rules
    Group Discussion
    Three hours of treatments, 30 pills and an hour of exercise. Every. Day. The struggle is real! Sometimes it can be difficult figuring out how to stay compliant with therapies while still living a fulfilling life. In this discussion group, we'll exchange tips and hacks that have made things easier and how we've overcome personal hurdles to compliance.
  • I Feel Good! Exploring Holistic Modalities
    Group Discussion
    You've probably heard about essential oils, natural healing methods, and various relaxing techniques. Maybe you're not sure where to start or what any of that means? Join us as we discuss the various ways we’ve explored healing our bodies, minds, and souls along with our typical care routine.
  • Paint and Quaint
    A sip and paint style painting lesson perfect for any skill level. Grab a snack, socialize, and create some art for your wall!
  • Book Club
    Reading is an incredible way to relax, find answers, and provide encouragement in our lives. Book lovers unite in this session where we will share and discuss books that have inspired us. Come with a book in mind and be prepared to share title, author, and how it has inspired you.
  • Guilt and Loss
    Group Discussion
    Losing a loved one is incredibly difficult. Losing a loved one to cystic fibrosis when you have cystic fibrosis has its own unique sense of hardship. What is it like to lose a sibling, family member, or friend who has the same illness as you do? Speak to others who have been through this and share your experiences with survivor's guilt, how you have struggled and coped.
  • I'm Getting Old! Aging With CF
    Group Discussion
    As more people with CF enter their 40s, 50s, 60s and beyond, how do the effects of aging figure into our lives and our health? Where do we go for information on the health implications of a new, aging CF population? Let's share our experiences with each other! Issues like menopause, osteoporosis, osteoarthritis, and general aches and pains of getting older will be discussed in this session.
  • New Lungs, New You
    Group Discussion
    Discuss how different life is post-transplant. What are the most common misconceptions? How did you cope with the transition? What tools were useful during this drastic life change? Who was most helpful and how? What is the hardest part of living post-transplant? What is the easiest? Come join a discussion with other adults on the other side of transplant! Bring your questions and frustrations!
4:50 - 5:00 p.m. ET
5:00 - 6:00 p.m. ET 
Keynote: Taking Care of Your Emotional and Mental Health
Many emotions such as guilt, shame and anger can become obstacles to contentment when living with CF. Yet more than ever, there are approaches to and resources for maintaining emotional and mental wellness. Join Dr. Stephanie Filigno, a licensed clinical psychologist, and Chris Kvam, and adult living with CF, as they discuss inner life with CF. 
6:00 - 6:15 p.m. ET
6:15 - 7:20 p.m. ET
Breakout Sessions Round 3
  • Yoga
    Take a break from sitting at your computer and S T R E T C H! Participate in this interactive yoga class to get some exercise to break up your other sessions and learn how yoga can help you manage CF
  • Balancing a Nontraditional Career Path
    Group Discussion
    CF can make working full-time impossible for some, but just because you can't work full time doesn't mean you cannot work at all. How do you contribute to your household with only a certain number of usable hours per week? With the emergence of the gig economy, freelancing and working part-time jobs has never been easier. Come find out how others with alternative work situations choose to fill their time and chat about how to fill your time and make your work intentional.
  • Medical Breakthroughs and Expectations
    Group Discussion
    There have been incredible breakthroughs in CF treatments over the recent years, especially in new clinical trials involving anti-infective, anti-inflammatory, and CFTR modulators. However, not everyone has had the same experiences with these breakthroughs. Some people have seen unbelievable positive changes in their health while others have been disappointed. This group will share the emotional side of how we manage our expectations when there is so much excitement about groundbreaking research. Please note this session will focus on our emotional experiences and will not be a medical discussion.
  • Creative Expression
    Group Discussion
    In this session we will discuss our artistic endeavors, and what inspires us. Whether you are exploring a new medium or are a seasoned artist, we want this space to be about connecting and encouraging one another in creative expression.

    What has art brought to your life? How has it helped you with your relationship with CF? What do you share with people and what is for you? What are you learning right now? What artists, resources, or mediums have challenged you in good ways to dig deeper into yourself?
  • How to Become an Advocate
    Do you want to have a voice in policy decisions that affect people living with cystic fibrosis? Advocating is an empowering way to take action and educate your elected officials on important issues regarding CF-related research, treatment, and access to care. It's easier than you may think! Learn how you can become an advocate and help shape public policy.
  • Taking Care of Your Emotional and Mental Health – Keynote Follow-Up Discussion
    Group Discussion
    Following the Taking Care of Your Mental and Emotional Wellness keynote with Dr. Stephanie Filigno and Chris Kvam, we’ll share our thoughts around mental and emotional well-being on life with CF.
  • Life Without Kids
    Group Discussion
    Join us for a discussion on living life without children. Whether you decided not to have children or were unable to have children, we'll share our feelings on this topic. What role did CF play? How did you work through the different feelings that came up? And much more.
  • Show Your Rainbow Colors
    Group Discussion
    This session will bring members of the LGBTQ community together to discuss their experiences with CF. Join us as we discuss how awesome we are, the circumstances of our lives, and our triumphs and struggles in the world. Please come with an open mind, an eagerness to understand others, and love and compassion for your CF family.
  • Taking CF on the Road
    Group Discussion
    Whether it's a car, plane, or hospital trip, we all pack and travel in some capacity. Come learn what others do to help making traveling a fun activity that also lets you have some time to relax. Do you love to travel and want to share your seasoned tips with others? Are you new to travel and want to hear how others with CF manage their meds on the go? Or just come chat about the most relaxing place you've been!
7:25 - 7:30 p.m. ET
7:30 - 7:40 p.m. ET 
Closing Event
7:40 - 9:00 p.m. ET
Happy Hour Mingle