Agenda
Sunday, June 3, 2018


Program Planning Work Group

These events would not be possible without volunteers from the CF community: Linda Bowman (Co-Chair), Laurie Eddy (Co-Chair), Anna Mcvey-Tyson, Carl Riedy, Jeannine Ricci, Jenn Gray, John Mercer, Lauren Doane, Lauren Vignola, Liz Buist, Lynda Griffin

4:00 - 5:00 p.m. ET 
Keynote Panel: The Ever-Evolving CF Family 
Looking through the lenses of CF parents, adults with CF, and a CF sibling, this intimate panel discussion will highlight the personal experiences of life with CF from different views. Diagnosis, transitions, acceptance and grief are parts of CF life that affect the entire family. Hearing these different perspectives on the CF journey gives us opportunities for a deeper understanding of each other and ourselves. We will close this panel with a time for questions from the audience.
Mara Cray
Panelist
Adult with CF
Jenn Gray
Panelist
CF Parent
Charlie Lahr
Panelist
CF Sibling
Josh Mogren
Panelist
Adult with CF
Carl Riedy
Moderator
CF Parent
5:00 - 5:15 p.m. ET
Break 
5:15 - 6:25 p.m. ET
Breakout Sessions Round 1
Attendees will join small-group video breakouts exploring the topics of 
  • Mental and Emotional Impact of CF on Individuals and Their Family
    Dealing with the physical symptoms of CF is usually at the forefront of our mind, but what about the emotional burden associated with this disease? A person living with CF and their family members face mental, emotional, and psychological challenges. This session is an opportunity for people with CF and family members to share experiences, insights, and resources about the impact of CF – including dealing with anxiety, guilt, depression, isolation and feeling overwhelmed.

     
  • Sibling Relationships
    The sibling bond can be one of the most important in our lives. How does CF influence that bond? All are welcome for an open discussion about the impacts on CF siblings, including feelings that the person with CF gets special attention, anxiety caused by the onset of illness in a sibling with CF, and mental and emotional health. We’ll also look at how siblings balance the roles of being a friend, family member, and part of a support system.

     
  • New Diagnosis: A Difficult and Emotional Introduction to CF
    No matter when you received a CF diagnosis, it surely packed an emotional punch. This session will be a conversation to help process the feelings – including fear, loss of control, grief, and guilt – that may emerge with a new diagnosis and help us consider how to move from the initial shock into a place of action. Whether you or your family member’s diagnosis was before birth, at birth, soon after birth, or later in life, all are invited to join this session to share how to navigate the roller coaster of emotions.
  • Living a Fulfilling Life With CF
    In this session we’ll explore the concept of fulfillment and life with CF. Questions about purpose, achieving goals, positive and negative influences, and relationships all have a different resonance when CF is part of the experience. How do we find meaning in our lives? How do we encourage one another to live with passion and purpose? This session is open to all CF family members and people with CF. Share in this heartfelt conversation on how to live our best life.

     
  • Storytelling Time: Making Decisions on Medical Procedures
    Weighing the pros and cons of a medical procedure can be difficult if you have CF, or if you are a member of a family or support system. Considering the complex information surrounding a G-tube, PICC line, port, surgery, or other procedure can cause anxiety, fear, and uncertainty as to whether it’s the best decision. Questions don’t end with the procedure itself, as follow-up care and maintenance come into play. If you are dealing with a procedure decision and want to hear from others who have gone through the experience, and talk to others who are considering their options, this is the session for you.

     
  • Yoga for All Levels
    Katie Malik – a registered yoga teacher, opera singer, freelance writer, and adult living with CF – will lead a yoga class for all levels of practitioners. She’ll introduce benefits of yoga and some considerations for people with CF, followed by a 45 minute yoga class which will include gentle guided breathing techniques and a variety of postures for exercising the body and the mind. She’ll close the session with a brief Q&A. Whether you’re brand new to yoga or a regular on your mat, join Katie to experience the calming and freeing practice of yoga.
6:25 - 6:40 p.m. ET
Break 
6:40 - 7:50 p.m. ET
Breakout Sessions Round 2
Attendees will join small-group video breakouts exploring the topics of 
  • Parenting and CF
    Every parent has something to teach! Whether you are an adult with CF thinking of starting a family, a CF spouse with children, or a parent of a child who has CF, there are ups and downs for all of us. Even with all the blessings of parenthood, CF can bring challenges big and small. All are welcome to join this session to share your joys, trials, questions, and experiences.

     
  • When CF Interrupts School Life
    Taking CF to school brings some unique challenges. It can feel like doctors’ visits, illnesses, outpatient procedures, hospitalizations, and IV antibiotics interrupt the educational and social aspects of school, causing students and families to feel like they are falling behind. We’ll discuss what resources have helped us successfully navigate challenges like school accommodations, educating school nurses and teachers, alternative education opportunities, and starting a new school year. Share your experiences about working with schools – from elementary to college – and learn tips for getting it all done.

     
  • Making Self-Care a Priority
    Self-care is important, but whether we are managing CF for ourselves or giving care to a loved one, we often put other important life needs to the side. Although many of us don’t like to admit it, caring for ourselves can spark feelings of selfishness, guilt, and anxiety. How do we balance these feelings with doing what needs to be done to live life with CF? Caregivers and people with CF are invited to this session to have an open dialogue around different experiences of self-care.
  • Effective Communication With Your Care Team
    Although communication with your care team is different for everyone, it’s an important factor in managing and living with CF. However, sometimes it’s hard to feel like we’re all one “team.” There can be challenges to speaking up and being an advocate for yourself or your loved one. How can we broach difficult topics, like the “why” of treatment changes and less-discussed aspects of health? How can we best convey our thoughts, questions, and fears to our care team? Join this session to share your experiences and approaches to working effectively with your care team.

     
  • Educating and Communicating with Family Members About CF
    Building a supportive community often means educating family members and friends about cystic fibrosis. It can be challenging to explain aspects of the disease-- like the need to avoid germs or time-consuming treatments-- and we can feel hurt or angry when other people we’re close to don’t understand, seem uninterested, or are in denial. This session is open for family members and people with CF to discuss the delicate nature of sharing your own experience with CF or your experience as a person with CF or member of a CF family.

     
  • Breathwork for the Whole Family
    Anyone touched by cystic fibrosis knows that breath and lung capacity are key elements in health and well-being. In addition, our modern life frequently disconnects all of us from our breath and body and keeps us only in our mind. Taylor Lewis has spent the past decade as an exercise specialist, with emphasis on strength, conditioning, postural restoration and functional movement. During this session he’ll speak from his experience educating and training people living with CF about exercising and breathing for strength and focus, and he’ll lead the entire group through exercises and breathwork that are beneficial to all. The session will close with Q&A.
7:50 - 8:05 p.m. ET
Break 
8:05 - 9:15 p.m. ET
Breakout Sessions Round 3
Attendees will join small-group video breakouts exploring the topics of 
  • Mental and Emotional Impact of CF on Individuals and Their Family
    Dealing with the physical symptoms of CF is usually at the forefront of our mind, but what about the emotional burden associated with this disease? A person living with CF and their family members face mental, emotional, and psychological challenges. This session is an opportunity for people with CF and family members to share experiences, insights, and resources about the impact of CF – including dealing with anxiety, guilt, depression, isolation and feeling overwhelmed.

     
  • When CF Interrupts School Life
    Taking CF to school brings some unique challenges. It can feel like doctors’ visits, illnesses, outpatient procedures, hospitalizations, and IV antibiotics interrupt the educational and social aspects of school, causing students and families to feel like they are falling behind. We’ll discuss what resources have helped us successfully navigate challenges like school accommodations, educating school nurses and teachers, alternative education opportunities, and starting a new school year. Share your experiences about working with schools – from elementary to college – and learn tips for getting it all done.
     
  • New Diagnosis: A Difficult and Emotional Introduction to CF No matter when you received a CF diagnosis, it surely packed an emotional punch. This session will be a conversation to help process the feelings – including fear, loss of control, grief, and guilt – that may emerge with a new diagnosis and help us consider how to move from the initial shock into a place of action. Whether you or your family member’s diagnosis was before birth, at birth, soon after birth, or later in life, all are invited to join this session to share how to navigate the roller coaster of emotions.
  • Effective Communication With Your Care Team
    Although communication with your care team is different for everyone, it’s an important factor in managing and living with CF. However, sometimes it’s hard to feel like we’re all one “team.” There can be challenges to speaking up and being an advocate for yourself or your loved one. How can we broach difficult topics, like the “why” of treatment changes and less-discussed aspects of health? How can we best convey our thoughts, questions, and fears to our care team? Join this session to share your experiences and approaches to working effectively with your care team.

     
  • Storytelling Time: Transitioning From Pediatric to Adult Care
    Building a bridge from pediatric to adult care can be daunting for a person with CF and their family members. How can everyone work together to ensure the process is successful? Letting go of the caretaker role or assuming the reigns of your own care leads to questions about boundaries, empowerment, and asking for help. Explore the feelings around navigating changing roles, letting go, and promoting independence. Families and people with CF who are going through or have gone through this process, are welcome to join.
9:15 - 9:20 p.m. ET
Break 
9:20 - 9:30 p.m. ET 
Closing Session