Save Time by Filling Out Research Room Forms Ahead of Time

Research Room Enrollment Forms are now available online. Save time at PHA’s International PH Conference and fill out your paperwork before you arrive at the Research Room. This year, the event welcomes researchers studying topics from genetics of pulmonary hypertension (PH) to autoantibodies in pulmonary arterial hypertension (PAH) and even psychological aspects of PH. Patients and non-patients are encouraged to participate!

Fill out your forms now

Conference Sold Out!

Due to overwhelming response, PHA's 10th International PH Conference and Scientific Sessions is SOLD OUT. We are sorry to disappoint, but at this point we are unable to take advance and on-site registration.

If you are not attending Conference, you can follow Conference happenings here on Table Talk: Wired, on PHA's Facebook page, and Twitter (#PHAConference). Also, recordings of many of the sessions will be available on PHA’s website over the coming months.

Meet Your Conference Roving Reporters!

Earlier this year PHA put out the call for aspiring teen journalists in the PH community to participate in our Roving Reporter contest. The contest winners will be assigned activities to write about each day at Conference for the next morning’s edition of Table Talk, the Conference daily print newsletter distributed to Conference attendees.

Congratulations to Olivia Hess, Nicole Northrop and Meera Salamah, our Roving Reporters for PHA’s 10th International PH Conference and Scientific Sessions! Read on to meet these teens, and look for them at Conference as they cover each day’s happenings. They might even interview you!

Olivia Hess
Olivia is the sister of PH patient Iain Hess. She says, “For fun, I love to dance, ski, swim, play sports, and spend time with family and friends. Two years ago at the Conference in California, I had such a great time meeting people and going places. I am really looking forward to the Conference overall, being able to see the friends I made, and everything else it has in store. I'm so happy to be able to be a Roving Reporter. Even though I don't have PH myself, I’m really excited to be able to show other people my perspective of what my brother and other people have to deal with on a daily basis.”

Nicole Northrop
Nicole was diagnosed with PH on January 22, 2010. For fun, she enjoys playing on the computer, drawing, writing and exploring photography. Nicole is really looking forward to this Conference because it will be her very first time at a PHA International PH Conference! As a Roving Reporter, she is looking forward to the opportunity to practice her reporting skills, enjoy herself and have fun at the largest gathering of PH patients, caregivers and medical professionals in the world!

Meera Salamah
Meera was diagnosed with PH in April 2008. “I love reading and painting and cooking (especially the eating part). I also enjoy writing short stories, and I spend a lot of time with my family,” she says. “At Conference, I am really excited to meet new people, learn about new treatments, volunteer and be a Roving Reporter! I love to write and this really gives me an opportunity to have a lot of fun and stretch my wings.”

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.

What You Are Most Looking Forward To

We asked our online community to complete the following sentence. This is how they responded.

At PHA's upcoming International PH Conference I am most looking forward to....

• knowing many people with this condition and learn about new research super excited !!
• I can't decide but probably just meeting people and learning more about PH. :-) 
• For me, meeting new phriends and catching up with old phriends. Also, volunteering! 
• ‎:) can't wait !!!
• hearing about it. LOL!! 
• learning new things and meeting friends! 
• Spending time, laughing & having fun with phriends. 
• podcasting!
• Seeing all my colleagues and learning something new! 
• smiling faces and people who can motivate me to do fund-raising
• Meeting other people who are going through the same illness as me. 
• Everything. I am looking very forward to this conference. Thanks to the help of PHA and others who donate to scholarship fund I am able to attend.
• Everything! It's our first conference! 
• motivation, learning, and meeting online friends. 
• learning about nutrition and what I can do to support other PHers and how to raise awareness. Soooo thankful to those that support the scholarship fund so I get to go! 
• Learning what is happening in the research field, and just experiencing being with other people with this disease.
• Getting to know other people my age who are struggling with PH. 
• See my doctor talk there. 
• education and meeting fellow PH'ers 
• Wish I could be there to learn all there is to learn & meet others with the same issues. Hope there will be audio and/or videos for those of us who don't have the money to attend. (editors note: recordings will be available after Conference) Have fun everyone! 
• meeting other people who "breath like me".

More Than Just Breakfast…the Most Important Meal of the Day

Posted by
Amanda Nguyen
PHA Medical Services Intern

Dr. Robyn Barst, MD, is seen here talking to patients about
young adults with PH transitioning to adulthood during the
‘Dine with a Medical Professional Breakfast’ at the 2010 Conference.

How often do you get to have a conversation with a pulmonary hypertension expert over a nice meal? Many of us never get this opportunity. The formality of a doctor’s visit may make it difficult for some to have an open dialogue with their healthcare provider. At Conference, we encourage active conversation between patients and medical professionals with the “Dine with a Medical Professional Breakfast.” This unique gathering brings everyone together for a lively discussion about PH-related issues.

This special breakfast is a two-part meal session. The first half will feature a panel of two doctors and one nurse who will be answering questions about PH. The second half of the breakfast is a breakout discussion that takes place at the individual tables. Each table is assigned a different discussion topic and a medical professional ready to answer questions. Upon entry into the dining room, attendees will be given a map of the tables and topics to choose from. This interactive activity generates conversations about specific PH issues that are of interest to the patient.

This year’s breakfast, “Empowered Patients: Ask a Medical Professional,” will take place the morning of Saturday, June 23. Dr. Karen Fagan, MD, will be the moderator of a two-person panel featuring Dr. Robyn Barst, MD, and Traci Stewart, RN, MSN. You can look forward to a host of topics for the dine with a medical professional component of the breakfast ranging from general PH issues to specific topics about pediatric PH, various associated diseases and much more. There will also be several topics for Spanish speakers.

Medical professionals have always valued this event at Conference as a way to interact with patients in an informal setting. Traci Stewart, RN, MSN, one of this year’s panelists said, “The Power Breakfast is a fantastic opportunity for medical professionals and patients to talk together outside a clinical setting and chat about the PH issues that matter the most to them.” Before embarking on another busy day of Conference, don’t miss out on the chance to network with other patients and doctors and of course, enjoy a lovely breakfast at the same time.

And a quick reminder that online registration closes tomorrow at 3 p.m. If you haven't already, register now!

ALERT: Online Registration Closes Friday, June 8 at 3 p.m. ET!

More than 1,100 PH community members have already registered for PHA’s 10th International PH Conference and Scientific Sessions taking place June 22-24 in Orlando, Fla. If you haven’t registered yet, you can still take advantage of online registration until Friday, June 8 at 3 p.m. ET. Don’t miss out on this opportunity to join your fellow PH community members!

Register now

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 New Step in Collaborative Care: Patient Participation in Medically Led Session Panels

Posted by
Meghan Finney
PHA Patient Education Manager

PHA’s 10th International PH Conference and Scientific Sessions offers a great deal of education for patients and their family members. For many attendees, the Medically Led Sessions are a highlight of Conference. These sessions are concurrent educational sessions for patients and family members led by panels of medical professionals, and, for the first time ever, patients on select sessions.

This new, unique structure will serve as a true testament to the Conference feeling of collaboration and bringing together the PH community. This year, we’re excited that two sessions – Emergency Situations and Defensive Dining – include patient panelists who will bring their perspectives to the panel. We expect that this format will be successful and hope to increase the number of patient panelists involved in future Conferences.

This year, we also look forward to bringing together over 125 medical professionals to discuss 40 sessions on a variety of PH-related topics. These sessions will address a range of topics covering everything from general pulmonary hypertension information, to living with PH and pediatric issues.

Don’t worry if you can’t make it to all of the sessions. PHA is recording the Medically Led Sessions and will post them on PHA Classroom following Conference. 

Learn more about the Medically Led Sessions

Conference Information Goes Mobile!

Have you heard about the newest way to get your up-to-date Conference information? PHA’s 10th International PH Conference and Scientific Sessions Mobile Application is currently available to download for all phone platforms and even for PCs and Macs! But this isn’t just your average mobile app; the Conference Mobile App is a web-based app that works directly from your device’s web browser, which allows for easy updates on new information without all those insistent push notifications.

This app is your one-stop shop for everything you want to know about programming at Conference. It’s been recently updated with session listings and an abundant list of speakers for each session. You can chart your course for Conference using hotel and exhibit hall maps or pre-plan out your schedule by selecting your favorite sessions. You can even register for Conference via the app!

With constant event alerts and immediate connection to PHA’s Facebook, Twitter and YouTube pages, the Conference Mobile App is the best way to stay connected and in touch with everything Conference. So don’t delay, and download the Conference Mobile App today!

Please note that this is not a traditional native app and cannot be purchased through the iTunes store, Android Market or Blackberry App World. Instead, it is bookmarked directly from your device's Internet browser and will work with any device, including a laptop or desktop computer!

For directions on how to view and download the app please visit our Conference site.

Live Education for Medical Professionals at PHA’s 10th International PH Conference

Posted by
Rebecca Kurikeshu, MPH
PHA Medical Outreach Program Associate

The medical programming at PHA’s 10th International PH Conference and Scientific Sessions promises to be an exceptional opportunity to bring the field’s top PH specialists together for education and networking. The Scientific Sessions program will bring together approximately 400 physicians, researchers, and allied health professionals with an interest in pulmonary vascular disease.  This year's topic, The Genetics of Pulmonary Hypertension, will feature PH experts sharing their knowledge of heredity in the field. Young investigators and seasoned PH professionals will participate in these sessions together, offering a unique opportunity for mentoring and growth in the field.

The programming begins on Thursday, June 21, with two educational dinner forums, one for members of PH Clinicians and Researchers (PHCR) and one for PH Professional Network (PHPN) members, focusing on important factors in PH care and scientific advancements in PH.

The Scientific Sessions program continues on Friday, June 22, with a full day of programming that will focus on this year’s theme, genetics. Esteemed speakers will lead sessions on topics ranging from PH and the BMPR2 pathway, to the role of microRNAs in PH. The day will also feature a robust presentation of abstract posters, and free-form panel discussions about the top abstracts. Medical professionals with all levels of experience are encouraged to attend the Scientific Sessions and review the posters.

While you’re here, we also invite you to take part in the PH Fundamentals: Continuing Education Sessions for Medical Professionals, which targets medical professionals interested in learning more about the basics of PH. These sessions will be held Friday through Sunday.

Physicians at the 10th International PH Conference and Scientific Sessions can receive a maximum of 15.0 AMA PRA Category 1 Credits, and nurses can receive a maximum of 15.0 contact hours of nurse CE credit.

For more information about Scientific Sessions, speakers, and topics, please visit our Scientific Sessions page.

For more information about PH Fundamentals, please visit our PH Fundamentals page.

Tips for Traveling with PH

Planning to attend PHA’s 10th International PH Conference or a summer getaway? PH does not have to hinder your travel plans! This recording from our last Conference shares tips for traveling, including information on traveling with oxygen. Planning ahead can take the stress and what-ifs out of traveling with PH.

Listen to recording

Conference is Truly International -- Check Out Our Programming for Global Attendees

Posted by
Meghan Tammaro
PHA's International Services Manager

PHA’s International PH Conference and Scientific Sessions draw in an increasing number of participants from around the world each year, and PHA is pleased to offer programming specifically for global attendees. In 2010, PHA hosted the First International Leaders’ Summit for 23 PH association leaders from all over the world. The 10th International PH Conference and Scientific Sessions will feature the Second International Leaders’ Summit as well as many new programs for global patients, PH organization leaders and medical professionals.

The Second International Leaders’ Summit fits perfectly into the theme of this year’s Conference: “The Power of One: From a Kitchen Table to Around the World.” With over 55 PH organizations around the world, 25 associations will be represented at this year’s Summit with over 35 representatives in attendance! The goal of the Summit is for participants to gain information from one another, which they can use for the growth and development of their own organizations. Topics of discussions at the Summit will include Managing a Support Group, Psychosocial Resources, Patient Databases and Registries, Building Relationships with the Medical Community, Building Corporate Relationships, Building Patient Relationships, Public PH Awareness Campaigns, The Power of Patient Stories and Creating Change in Your Government. In addition, the Assistant Director for the Center for Public and Non-Profit Management at the University of Central Florida will speak to participants about Association Management and Growth.

While the Summit is the biggest program for global attendees at Conference, there are many more opportunities for the global community to come together. On Friday, June 22 two regional meetings will be held at 11:30 a.m. for attendees from Canada and for members of the Spanish speaking community. These meetings will be hosted by PHA Canada and the Sociedad Latina de HP. Also on June 22, the International Reception will be held from 6:00-7:00 p.m. in the Odyssey Room as a way to bring members of the global community together and to honor the first recipient of the International Physician Award, Dr. Julio Sandoval. Finally, on Saturday, June 23 the International Strategy Meeting will begin at 11:30 a.m. to bring together the international PH leader community after the excitement of the Summit.

Don’t forget to stop by the International booth in the Exhibit Hall to see all of the PH resources available worldwide and in many different languages! We look forward to seeing everyone at this event.

Learn more about international programming

PHA Recognizes Outstanding Members of the PH Community

Matacha Saul receiving the Julie Hendry Memorial
Scholarship Award in 2010

Conference is the perfect time to recognize the unique individuals in our community who go above and beyond to fight back against pulmonary hypertension.

Year after year, PHA is simply amazed by how much our community members do to support the fight against PH. From leading support groups, raising awareness and fundraising, to advocating for PH and reaching out to the media – there are a ton of ways to get involved with our common cause.

The 2012 winners are a group of dedicated and passionate patients, caregivers and medical professionals who are inspirational and exemplary members of our community!

Award recipients are nominated and selected by community members just like you. In no particular order, the 2012 winners are…

Julie Hendry Memorial Scholarship Award
Jaclyn Burdick

Outstanding Allied Health Professional
Mary Bartlett, RN

Outstanding PH Citizen
Jeanette Morrill

Outstanding Support Group Leader
Nicole Cooper

Outstanding Young PH Citizen
Sean Wyman

International Physician of the Year
Julio Sandoval Zárate, MD

Physician of the Year
Raymond L. Benza, MD, FACC, FAHA

Friends of the Family Awards:

Corporation of the Year
Pfizer, Inc.

Foundation of the Year
Jansen Family Foundation

We will honor these award winners at PHA’s 10th International PH Conference and Scientific Sessions in Orlando, Fla., June 22-24, 2012.

Read more about the 2012 award recipients and everything they’ve done to support PHA and the fight against PH.

Best Friends Coming to Conference Together & Modeling in Fashion Show

18-year-old Shannon O’Donnell is getting ready to attend her 3rd International PH Conference this June in Orlando. But this time around, her best friend of 8 years, Jen, will be by her side to experience the magic of the event! In this short video blog, Shannon & Jen talk about their friendship, and their plans to participate in the Saturday evening PH Fashion Show…they each show off an outfit they plan to model, too!



Make attending the PH Fashion Show part of your Conference experience! This event allows participants to use fashion to help the world see the individual, not the disease. The show kicks off Saturday, June 23, from 5:00 p.m. – 6:00 p.m.

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.

Last Call for Notes of Thanks and Remembrance!

Last call! Print your special note of appreciation in the program book for PHA’s 10th International PH Conference! You don’t have to go to Conference to be able to tell the 1,300 expected attendees who is important to you. Each note is only $25 and all proceeds go toward the Conference Scholarship Fund! Hurry – all notes are due tomorrow, May 1 by midnight!

Submit your note of appreciation

Kick Back at Generation Hope After Dark

Colleen Brunetti (on left) at Generation Hope After Dark in 2010

Join your Generation Hope peers (ages 20s-30s) for conversation and cocktails at the 2012 International PH Conference – Generation Hope After Dark event. Unwind with the new generation ready to fight PH at this exclusive event. Fellow Generation Hope member, Colleen Brunetti shared: 

“This event is a really great time to get to know some other patients in Generation Hope in an informal setting. It is nice to kick back after a day of meetings and seminars.”

So, kick back with other generation hope members – order a special mocktini and enjoy plenty of appetizers! As Colleen describes the event, “It is just about ‘getting to know you’ (the individual) and not so much about meds, and it was nice to have time to just socialize with other young adults.”

Expand your social and support circle by meeting other inspiring people who, as Colleen describes, “are young adults living their lives despite PH.”

This event will be held at Conference on June 23, 9:00 p.m. Let the countdown begin!

New Patient/Family Led Sessions to Look Forward To

Posted by:
Doug Taylor
Support Group Leader, Lexington, S.C.
2012 PHA Conference Patient/Family Led Sessions Co-Chair

One of the many highlights of each Conference are the Patient/Family Led Sessions. They provide an opportunity for pulmonary hypertension patients and caregivers to learn from one another on a peer-to-peer basis. The doctors, nurses, pharmacists, etc. certainly know a lot about pulmonary hypertension, but the Patient/Family Led Sessions provide a forum for patients and family members to hear from people who have faced the same dilemmas they are facing. 

As the Co-Chairs of the Patient/Family Led Sessions, Jeannette Morrill (pictured right) and I have placed a lot of thought into the topics that will appeal to our community and identified panelists who offer a variety of experience and knowledge. Sessions will cover a broad range of topics. Additionally, we have several new sessions which will appeal to young adults, parents of pediatric patients and Spanish-speaking attendees.

New topics this year include:

Family Affair
Your doctor’s advice that you (or your spouse) 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 pulmonary hypertension. 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. 

9 to 5 with PH
Find a way to continue working and 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.

Making PH Sexy
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) don't have to be sacrificed just because you have pulmonary hypertension. 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
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.

Parents - Communication for a Healthy Family
Coping with pulmonary hypertension can be stressful for everyone in the family. During this session we will cover strategies for communicating about pulmonary hypertension, and maintaining the relationships that PH impacts. These topics will include the spousal, parent-child, and sibling relationships.

Parents - School and PH
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.

Spanish speaking sessions:

Hipertensión Pulmonar Y Relaciones Entre Familiares
Equilibrar su familia con sus necesidades de salud puede significar que se tengan que tomar decisiones difíciles. Únase a nosotros para esta discusión sobre como mantener una buena calidad de vida, al mismo tiempo que cumplimos con nuestras responsabilidades familiares. Conozca como otros pacientes han manejado su vida en las diferentes situaciones, siendo casados, padres solteros, y/o solteros.

Sobreviviendo Hipertensión Pulmonar: Lecciones De Sobrevivientes De Largo Término
Escucha las historias de pacientes "viviendo" y "sobreviviendo" con hipertensión pulmonar por 15 años o más. Comparte con los miembros del panel, aprende de ellos sus trucos personales para sobrevivir y aplícalos a tu propia vida. Conoce sus secretos para vivir con esperanza y fortaleza.

How can you have the best experience at the Patient/Family Led Sessions? Decide which two Patient/Family Led Sessions you want to attend in advance. This year, the sessions are scheduled for 2:30 p.m. – 3:30 p.m. and 4:00 p.m. – 5:00 p.m., Friday, June 22.  For the complete list of sessions being offered go to our Patient/Family Led Sessions web page, or look in the Conference handbook after you check in.

Associated Disease Filming Coming to Conference

Posted by:
Chanda Causer
Patient Outreach & Services Manager

Fifty percent of pulmonary hypertension (PH) patients developed PH due to another disease. Every disease associated with pulmonary hypertension represents a disease community - some of which are millions of patients strong - with a vested interest in pulmonary hypertension research, education and awareness. In order to better serve this growing population, PHA will develop videos to educate, build awareness and engage new constituents who have PH and an associated illness.

We will be filming the first four videos for the series at Conference featuring patients living with PH in association with HIV, lupus, scleroderma and adult congenital heart disease. Each video will center on a patient story and information from a medical professional, who are experienced with both conditions. Once completed, these videos will be promoted on PHA’s website and distributed to other disease related organizations.
 
If you are attending Conference, we need your help! If you are a PH patient living with one of the four targeted associated illnesses and you have an interest in telling your story as part of the video series, please contact Chanda Causer, Patient Outreach and Services Manager, at ChandaC@phassociation.org or at 301-565-3004 x777.

We look forward to working with you to continue building our resources for those living with PH and associated illnesses. See you in Orlando!