Patient/Family Led Sessions

The Patient/Family Led Sessions allow you to learn from and teach each other. These sessions are led by PH patients and family members with a wealth of experience to share. These sessions will take place in the afternoon on Friday, June 22.

*All speakers, topics and meeting groups are subject to change.

9 to 5 with PH
Panelists: Brittany Riggins (Chair); Carly Pollack-Smith; Leslie Polss
Find a way to continue working while keeping up your health. Our jobs and careers make up such a large part of our identity that few of us want to give them up – not to mention the need for income and access to health insurance. Hear how other PH patients manage to work. Join this discussion of workplace rights and what you should or shouldn't tell your employer and fellow employees.

Bridging the Gap: Maintaining Insurance During Time of Change and Transition
Panelists: Marge Lanzola (Chair); Michelle Moody; Tim Robertson
Whether you're turning 18, 26, changing jobs, applying for disability or retiring all together, keeping health insurance during life's major transitions is a must for PH patients and families. Learn how to make sure you or your family member doesn't lose coverage during these transitions.

Communicating to Family and Friends about PH
Panelists: Kim Ford (Chair); Gwen Brown; Arlene Schiro, NP
Explaining PH to those who don't understand your illness when you don't appear sick can be challenging. Turn scoffing to understanding. PH affects not only our lives, but our relationships as well. Learn to communicate your limitations and how to say 'no' when it is appropriate.

Communication for a Healthy Family
Panelists: Christina Doak (Chair); Michelle Calderbank, RN; John Hess
Coping with PH can be stressful for everyone in the family. During this session we will cover two major topics: strategies for communicating about PH, and maintaining the relationships that PH impacts. These topics will include the spousal, parent-child, and sibling relationships.

Coping as a Caregiver
Panelists:David Morrill (Chair); Joe Haan; Alyson Rupp, LSW; Marcia Stibbs
Caregivers are special people with needs of their own. Caregivers need to learn to take care of themselves if they are to take care of someone else. Balancing demands of caregiving while maintaining high morale and positive attitudes can be a challenge. Other caregivers have found ways to do so, and you can benefit from their experiences.

Doctor, Doctor – How to Talk to Your Doctor
Panelists: Stu Berwick (Chair); Louise Durst, RN; Tara Suplicki
Take control of your healthcare by getting organized, learning the lingo and asking the right questions. Coordinating multiple specialists and getting answers can be easier than you think if you know how to communicate effectively with your medical team.

Family Affair
Panelists: Colleen Brunetti (Chair); Wendy Bond; Hannah Lahmeyer
Your doctor's advice that you (or your spous) shouldn't become pregnant doesn't mean you can't have a family. Make informed decisions about family options when you or your spouse has PH. Others have already forged the path. Learn the ins and outs of adoption and PH. Find out how others with PH keep up with the kids they have.

Having PH – Not Letting PH Have You
Panelists: Cindy Pickles (Chair); Pam Carner; Amanda McKee
Day-to-day activities can become a challenge when you have PH. There are tricks and tips that can make life easier. This session will give you strategies for activities such as showering, dressing and dealing with weather extremes (both hot and cold).

Making PH Sexy
Panelists: Josh Griffis (Chair); Melanie Kozak; Joanne Sperando-Schmidt
Learn to recognize the frogs before you kiss them. Find the perfect partner – who will accept and respect your limitations. Socializing and dating (or just hanging out) don't have to be sacrificed just because you have PH. Hear how the panelists have addressed this issue and share your own tips. Discuss what to tell, when to tell and how to tell it.

PH Goes to College
Panelists: Sean Wyman (Chair); Sharon Keefauver; Emily Stibbs
Choose the college and career that are right for you! Hear from college students and recent graduates about how they juggled PH, school, career planning and even a social life. Learn about campus services and resources to help you have the time of your life, without compromising your health. Having a 'health plan' as you take on this responsibility is imperative.

School and PH
Panelists: Jane Northrop (Chair); Lori Heaton; Melissa Michaels
Balancing your child’s education with their health needs can mean facing challenging decisions. Join us for this discussion on schooling to learn how other parents approach these issues at different developmental stages.

Spirituality
Panelists: Rev. Steve White, PhD (Chair); Adrienne Dern, PHA Sernior Vice President
Explore inner strength and comfort through spirituality, faith and hope. Where does faith come from and how can it be found? Learn how patients and caregivers use faith as a coping mechanism in dealing with PH. Prayers and meditation are elements of all spiritual beliefs and can be used in times of spiritual need.

Surviving PH – Lessons from Long-term Survivors
Panelists: Diane Ramirez (Chair); Mark Arellano; Rita Orth, RN
"Live long and prosper." (Spock, 'Star Trek') Listen to patients as they tell their stories of 'surviving' and 'living' with PH for 15 or more years. Talk with the panel members to learn their personal tricks for thriving and apply them to your own life. Learn their secrets of hope and strength.

Traveling with PH
Panelists: Jeanette Morrill (Chair); Gerrilyn Connors; Marilyn Mears
Conquer planes, trains and automobiles. PH does not have to stop your travel plans. Even the need for oxygen should not keep you from traveling for business or pleasure, and especially not for doctors' appointments. Familiarity with TSA and FAA requirements can help get you on the plane. Planning and preparation are the keys to enjoying your trip.