Key Information for Conference Attendees

PHA’s 10th International PH Conference and Scientific Sessions is right around the corner. Read on for some final information and tips about what’s happening in Orlando!

Conference Hotel Information
PHA’s 10th International PH Conference and Scientific Sessions will take place at:
Renaissance Orlando at SeaWorld®
6677 Sea Harbor Drive
Orlando, Florida 32821
www.renaissanceseaworldorlando.com

Shuttle Information
If you are staying off-site at the Residence Inn Orlando at SeaWorld®, SpringHill Suites Orlando at SeaWorld® or Orlando World Center Marriott, PHA will be providing shuttle services between these locations and the Renaissance Orlando at SeaWorld®. Shuttles will be available from Wednesday – Sunday for Conference attendees. Schedules for the shuttle service will be available at the front desk of each hotel upon check-in, as well as at PHA’s Conference Check-in and On-site Registration booth at the Renaissance Orlando at SeaWorld®. Shuttle pick-up and drop-off will be located in the Oceans Porte-Cochere at the Renaissance Orlando at SeaWorld®.

Parking
The Renaissance Orlando at SeaWorld® offers both valet and self-parking options. Self-parking is available for $16 per day. Valet parking is available for $21 per day. All guests driving hybrid cars recieve complimentary valet parking!

Conference Program Books
Want a head start on planning for the sessions you want to attend on-site? The Conference Program/Handout book (PDF) is now available to download on PHA’s Conference website. Use this book to view titles, descriptions and scheduled speakers for all of the sessions at Conference. The Medical Education Program Book (PDF) for medical professionals is also available to download. This separate book contains information about the Scientific Sessions and Fundamentals of PH: Continuing Education for Medical Professionals sessions.

Travel Tips
Patients are encouraged to talk to their medical care team to plan their participation in Conference. For more information on traveling with PH, tools to help with your planning and a list of local resources visit our travel tips page.

PHA Membership
Every International PH Conference attendee must be a current member of PHA to attend. If you need to renew your membership or become a new member, you can easily do so before coming to Conference by contacting 301-565-3004 x756 or Membership@PHAssociation.org. You can also check your membership status on PHA’s website if you have a user account.

Kids’ Room
Kids have fun at Conference too! PHA provides a supervised Kids’ Room for children and teens (3-16 years of age; no diapers please) who accompany their parents to Conference. Games, crafts, field trips and other fun activities have been planned. Participation in the Kids’ Room is free of charge, but Conference registration and Kids’ Room reservations are required. Visit the Kids' room page for more information or contact 301-565-3001 x800 to make reservations.

Plan to “Stick it to PH” – Participate in the Research Room
PHA’s International PH Conference provides researchers with the rare opportunity to collect information and samples from a large number of patients at one time through the Research Room. Your participation will provide researchers with a clearer understanding of pulmonary hypertension and help bring them one step closer to finding a cure.

Save time by filling out the Research Room Enrollment Form before coming to Conference! Print the form available on PHA’s website and bring it with you to the Research Room. This information can be shared by all of the researchers participating at the event, so you will only need to fill it out once to contribute to multiple research initiatives!

Research Room Hours:
Friday, June 22: 7:00 a.m. - 5:00 p.m.
Saturday, June 23: 8:00 a.m. - 6:00 p.m.
Sunday, June 24: 8:00 a.m. - 10:30 a.m. *Updated!

Conference Connectivity
Don’t forget to follow along with Conference online as it happens!

• Conference Blog: Read blog posts from other attendees about what they are experiencing at Conference by visiting the Conference Blog throughout Conference. Want to submit a blog post of your own? Check out the BlogosPHere in the Exhibit Hall or submit from your own computer!
• Twitter: Let your PHriends know what a great time you are having by sending live tweets from Conference with #PHAConference. Also don’t forget to tag PHA (@short_of_breath) in your tweets!
• Facebook: Share your excitement with others who were unable to attend! Like PHA on Facebook and share your experience by visiting PHA's Facebook page.
• Mobile App: Gain instant access to Conference information, agendas, speakers, alerts and more by downloading the Conference mobile application to your phone! View download instructions

Be Part of PHA History with Just One Email
Stand up and be counted by contacting your senators and representative about the Tom Lantos PH Research and Education Act anytime between now and our International PH Conference in June. We’re counting each contact and will announce the results of everyone’s effort at Conference. The Conference 2012 Advocacy Challenge needs everyone whose life has been touched by PH — patients, medical professionals, family and friends, neighbors and co-workers — to take part! Together, our message to Congress will be loud and clear! Learn more and be counted. Visit the Conference Advocacy Challenge page or contact Elisabeth at 301-565-3004 x753 or ElisabethW@PHAssociation.org so our count can be complete.

Shamu, Mandalas, Trivia Games and More… Learn What’s in Store for the Kids’ Room

Posted by
Michal Rachlin
PHA Kerry Bardorf Family Support Program Associate

We are looking forward to a very exciting Conference Kids’ Room this year, with lots of fun activities for teens, tweens, and kids alike. Is your child attending Conference? Read on to learn some of what we have in store!
 
Field Trip
This year’s field trip is to (drumroll please)…….. SeaWorld Orlando! The field trip requires pre-registration; children under age 6 must be accompanied by an adult.

We have an exciting itinerary planned, including the ever-popular Shamu Show. Field Trip forms MUST be received by June 11 – visit our Conference site for full details!

Activities Galore!
This year’s Kids’ Room is going to be action-packed, with activities geared to different age groups. Trivia games, crafts, board games and more – including the traditional Wii giveaway drawing on Sunday morning. A full itinerary will be available at the Kids’ Room when it opens on June 22 at 12:30 pm.

Workshops
On Friday afternoon, Megan Mallory, PHA’s Associate Director, Publications, is leading a creative expression workshop on mandalas for kids and tweens. On Saturday morning Megan Mallory is leading a creative expression workshop for teens on journaling. On Sunday morning, Colleen Brunetti, PH patient and PHA Board member, is leading a workshop on feelings and American Sign Language for ages 7 and under.

We hope your children can join us for these exciting programs!

A Mother Shares Her Experiences as a Veteran of Four Conferences

by Christina Doak
PH Parent
Originally published in Spring 2012 Pathlight

PHA's 10th International PH Conference and Scientific Sessions in Orlando will be here before we know it. I’m sure parents are mulling over the decision to attend, but for me it is an easy decision. I will be taking my family to Orlando for my fifth Conference and their fourth. There is no other venue at which a family dealing with pulmonary hypertension can receive the same kind of support, emotional connection and education.

My family includes my husband, Jim, and our daughters, Katy, 13 years old, and Emily, 9. Katy was diagnosed with pulmonary hypertension in 2003, at the age of 4. In 2004 I went to the Conference by myself. It was a last-minute decision to attend, spurred by feelings of indecision about Katy’s medical care. Jim and I were considering putting Katy on IV Flolan(TM) but had no idea what this life change would mean for our family. At the end of the weekend, I left with feelings of hope, inspiration, optimism and confidence that I could make good decisions for Katy’s care. It was such a unique experience that I couldn’t wait for 2006 to take my whole family to the next Conference. You ask why?

There are several major reasons, the first being its educational value. I learn so much from the medical professionals. These professionals specialize in PH and are amazingly dedicated to their patients. They commit this weekend to sharing their knowledge with us. PHA gives structure to this education through scheduled topics and sessions, research posters, and the Exhibition Hall.

Everyone is friendly, compassionate and willing to share their experience and knowledge with you. Not only do you learn from the PH medical teams during the Medically Led Sessions, but during meals, in the hallways, and while attending the Patient/Family Led Sessions. You spend the weekend getting all your questions answered, not by one doctor, but by many. And for me, in my fight to help Katy battle PH, knowledge is power.

Another very important reason that I continue to return to PHA’s International PH Conference is the emotional support my family and I receive from the PH community. Parents of children with PH often struggle with a sense of isolation. PHA makes an amazing effort to provide opportunities for families to connect. Katy gets to spend the weekend with other kids who have PH, my husband and I get to know parents who share the same challenges and Emily gets to have fun with other siblings and PH patients. There is really nothing I can imagine that is more cathartic.

At Conference, parents get to share with each other how we handle school situations, exercise or sports, social situations, and how we communicate to our families about this awful disease. PHA provides many opportunities for us to share: the pre-conference meet-ups, the Patient/Family Led sessions, the support groups, socializing at the Parents' Mixer (new this year), meals and after-Conference hours in the hotel lounge.

Our kids get to find support through many avenues as well. The Kids’ Room includes activities for kids of all ages: crafts, video games, live entertainment and — new this year — a creative expression workshop. A field trip for kids and teens is provided (monitored by a nurse, of course). PHA provides youth learning opportunities and support groups. But mostly, the kids and teens socialize and have fun, both during Conference hours and into the night. And this, I think, is the most healing experience for them.

Finally, I want to share a few of my favorite Conference activities. I don’t ever miss the "Journeys" Luncheon in which patients and their doctors share amazing stories of inspiration and hope (bring a tissue). The fashion show is always standing room only. PH patients, including our friends and family, get to show off how they make their medical accessories a fashion statement! And most importantly, the friends I have made over the years continue to draw me back.

So despite being a nine-year veteran parent of a PH patient, I continue to attend PHA’s International PH Conference. And every time I learn more, find continued hope and inspiration, and feel renewed to face the challenges of the upcoming two years until the next Conference.