Conference Attendees Activate!

Carl Hicks spoke earlier at the Conference opening session about getting involved by contacting your Members of Congress to support the Tom Lantos PH Research and Education Act. The almost 1500 people here this weekend could make a huge impact on Capitol Hill if Members hear from all of us. The PH community responded. The BlogosPHere here in the Exhibit Hall has been swamped during every break between sessions since. You can participate from home and be counted in the Conference Advocacy Challenge by contacting your Members before Conference ends on Sunday. Contact your legislators 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

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

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

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.

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!

ANNOUNCEMENT: Early-Bird Registration Extended to April 9

More than 500 PH community members have already registered for PHA’s 10th International PH Conference and Scientific Sessions, The Power of One: From a Kitchen Table to Around the World. We hope you will join them! If you haven’t registered yet, you can still take advantage of the early-bird discount of $25/person through Monday, April 9. Don’t miss out on this opportunity!

Register now

For questions about registration, please contact Registration@PHAssociation.org or 301-565-3004 x768.

Please note that the early-bird discount rate will not be extended past Monday, April 9.

So Excited That They Registered First

Posted by:
Diane Greenhalgh
Conference blogger
a.k.a. PHA Director of Web Services 

Pam and Eric Olayos (pictured below) were the first people to register for Conference when registration opened up in January. Read below about Pam's Journey with pulmonary hypertension and what she's looking forward to at Conference.

How long has PH been in your life?
I was diagnosed just over two years ago. For approximately three years prior to that, like so many others, I had a series of misdiagnoses: asthma, bronchitis, pneumonia etc. My PAH was confirmed at the University of Chicago in mid-December 2009. By mid January, I started Flolan therapy.

Have you attended a PHA Conference before?
I attended my first conference in 2010 - just six months after my diagnosis. I was so impressed with absolutely everything about it. Having been recently diagnosed, I wanted to take it all in and learn as much as I could. My husband and I decided to each attend separate sessions and then compare notes afterwards. I was particularly impressed with the work being done in the research room. It was encouraging to see so much effort being put forth to try and find a cure for PH. I was honored to be a part of it.

What are you most looking forward to at the Conference coming up in Orlando in June?
Now that I have been living with PAH and Flolan for two years, I feel like I have a better understanding of which sessions to select and what questions to ask. I also look forward to connecting with others that I have "met" on the Discussion Boards. Once again, I plan to participate in the Research Room.

Nominate the Outstanding Patient, Caregiver or Medical Professional in Your Life

Posted by:
Sally Maddox
PH patient, Greater Atlanta Georgia Support Group Leader, PHA Board of Trustees member, 2012 PHA Conference Committee Awards Chair

Here is your opportunity to show some love to those that work hard in the PH community by nominating them for an Outstanding Member Award.

I have been to all PHA Conferences since they started in Stone Mountain, Ga., in 1994, and the Outstanding Member Awards have been a part of them for the majority of them. I first became involved with the awards when I was asked to present an award to Barbara Smith and her family many, many years ago. Barbara was a dear friend of mine that did so many things for the pulmonary hypertension community. In the early years, her entire family did registration at Conference. which is a huge undertaking from making sure that all the name tags were correct to registering people that just showed up to Conference the day it started.

Of course, there are many other stories about an outstanding Physician or Nurse. The list of those that have been presented the Outstanding Patient Award and Support Group Leader award reads like a Who's Who list in PHA history. Let's not forget our caregivers that fight this PH battle with us daily.

You can view the different categories and nominate someone through our online form in the Awards section.

The deadline to nominate is March 15, 2012 (Feb 29, 2012 for Outstanding Physician). Don't wait to nominate!