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!

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.

What's in Store for Families of PH Kids

Posted by:
Michal Rachlin
PHA Kerry Bardorf Family Support Program Associate

“I will be taking my family to Orlando... There is no other venue at which a family dealing with pulmonary hypertension can receive the same kind of support, emotional connection and education.” – Christina Doak, Spring 2012 Pathlight (pictured below with family in 2006)

If a young person in your family has PH, we hope you’ll be joining Christina and her family at PHA’s International PH Conference. The Conference may be your only opportunity to meet other families like yours. PHA worked closely with our Parents Advisory Board to identify the best ways to maximize this opportunity for families of PH kids.

We are very excited to announce two new breakout sessions for parents this year:

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

NEW! 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.

Additional breakout sessions of interest to parents include:

• Coping as a Caregiver 
• PH Goes to College
• Communicating to Family and Friends about PH 
• Ask a Pediatrician – Parents Only (0-11 years)
• Ask a Pediatrician – Parents Only (12-18 years)
• New Medical Therapy for Children with PH
• Teeth, Bones and Other Surgical Problems for Kids with PH

Another addition for parents is our Parents’ Mixer. Remember how nice it was to hire a babysitter and go out with your friends? We’ve scheduled this Mixer to take place while the Kids’ Room is open, so you’re all set! Join other parents in the Parents' Mixer at Conference and unwind as you enjoy this adult-only event.

These are just a few of our newest opportunities for families. You can visit the Conference Pediatric Programming page for complete information on everything related to Conference programming for families of children with PH.

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!

Rita Goes to Conference ... For 7th Time!

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

This afternoon I interviewed Rita Orth, a pulmonary hypertension patient in California who has attended six PHA Conferences and is planning on attending her 7th in June. Rita is heavily involved with the PH community. She is:

• a support group leader in San Jose, Calif.,
• a PHA Patient-to-Patient Support Line volunteer,
• a member of PH Professional Network,
• a member of PHA's Board of Trustees,
• and a member of the Conference Committee working on organizing the Support Group Meetings.

Listen to the interview below about what Rita had to say about what Conference is like. In sum, "It's amazing!"

Affirming the Human Spirit

Posted by:
Rino Aldrighetti
PHA President

“Thank you for reminding me why I became a doctor.”

The first time I heard those words were in 2002 at PHA’s Fifth International Conference in Irvine, California. It was a striking statement from a globally recognized PH physician.

Read more on Rino's blog

Karen's First Conference

Posted by:
Karen Madison
PH patient, Lexington, S.C.

My name is Karen, and I am super excited about attending my first Conference. I was diagnosed in Oct. 2007 and was misdiagnosed for four years. I was at a total loss when they told me that PH is a rare incurable disease and didn't know what to ask or what to do. Several weeks after they diagnosed me they told me I also had lung cancer, which proved to be false.

I finally got on the computer and started looking up the programs our local hospitals offer in hopes of finding something to attend where I could learn more about this and not be alone in it. I found that Lexington Hospital did have a PH support group that met every other month. So I called the number listed, and my husband and I went to our first meeting. Doug Taylor is a wonderful leader, and the folks that come and speak to us are very informative. We have learned a lot and no longer feel like we're on our own.

I'm looking forward to learning more at the Conference and helping out with the research. I know there is still a lot to learn and things are changing all the time.

Thank you PHA for all the information that you send out to us.

And We’re Off… Conference Registration is Open!

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

As the largest gathering of PH patients, caregivers, family and medical professionals, PHA’s biennial International PH Conference and Scientific Sessions is always the highlight of the PH community calendar. It is a kind of reunion where we all get together to catch up on the latest research and education, to network with others in the PH community, and to see PHriends or colleagues we only get to see in person every two years at this Conference. The Conference also attracts a good number of new PHers who may never have met another PH patient or caregiver before. For the first time, they know that they are not alone, that there is hope.

This year’s Conference will be taking place June 22-24 at the beautiful Renaissance Orlando at SeaWorld® in Orlando, Fla., the state where our community began with a meeting of four women around a kitchen table. That very kitchen table used by our founders will be at Conference, leading us to this year’s Conference theme… The Power of One: From a Kitchen Table to Around the World.

And from around the world they will come, as our Conference is truly an international meeting. Leading PH medical professionals from across the globe will be meeting about the latest in the PH field at our Scientific Sessions, June 21-22. For PH association leaders from other nations there will be a pre-Conference International Leaders’ Summit, June 21.  And we have three jam-packed days of education, networking, advocacy and research for everyone June 22-24!

I’m very excited about attending this year’s Conference! I’ve been to three so far and they keep getting better and better. My favorite part is the “Journeys” luncheon where three or so pairs of doctors and patients share the story of their PH journey together. The experience always evokes a mixture of tears and laughter.

So as far as I’m concerned the countdown clock on the Conference homepage can’t tick down fast enough. Our president Rino Aldrighetti loves those types of gadgets too, but the seconds ticking away make him a little nervous with all the things to be done. While there is a lot to do between now and then, it will all come together to be a life-changing weekend when we will learn a lot and have a great time doing it because of the PHriends we get to share it with.

I hope to see you for our 10th reunion at our 10th International PH Conference and Scientific Sessions. Registration is now open, so get started planning your trip today!

• Register for Conference
• Book your hotel at the PHA arranged rate
• Plan your travel