Video: PHA Visits Indianapolis Ahead of Conference!

PHA staff member, Rebecca Gifford, recently visited Indianapolis in preparation of our upcoming 2014 Conference this June. Not only did she visit the Conference hotel, she also scoped out different locations for our Kids' Room field trip, and got the chance to meet with some of our vendors who will help make Conference an amazing experience for all!

Check out the video below, filmed on-site during Rebecca's trip.

 

“Find a Way to Celebrate Each Day”: Doug Taylor Offers His Behind-the-Scence Look at Conference

With PHA’s 2014 International PH Conference and Scientific Sessions quickly approaching, we thought it would be beneficial for the PH community to hear from a familiar face about some things to expect at Conference. Doug Taylor, a PH patient from South Carolina, is co-chair of the Patient/Family Led Session Subcommittee on our Conference Planning Committee. This means that not only is Doug attending Conference in Indianapolis, but he is also helping determine the different sessions that will be presented for all attendees! Along with his role in Conference, Doug is also a PHA Support Group Leader, a PHA PHriends email mentor and a volunteer with our New Patient Advisory Board.

We were able to ask Doug a few questions about his involvement with our 2014 International PH Conference and PHA. Read on to hear about Doug’s Conference experiences and what you can expect during the Patient/Family Led Sessions!

Kristie [PHA Publications Intern]: What is your experience with PHA’s International PH Conference?
Doug: I have attended three Conferences; the first was in Houston, Texas [in 2008].

K: What are some of your favorite moments from previous Conferences?
D: I had an incredible experience going into the first dinner plenary session in Houston. I was extremely stunned to see 1,200 people in the room! All of them were there because they had pulmonary hypertension, were caregivers for PH patients, were friends of PH patients or were in the healthcare or pharmaceutical professions dealing with PH patients. It was an unforgettable experience. I absolutely loved the opening plenary session in Orange County, Calif. [2010], about Dr. Frantz, Dr. Benza and Jessica Lazar, PA, climbing Mt. Kilimanjaro to promote PH awareness. At the 2012 Conference, I was able to meet three of the four founders of the Pulmonary Hypertension Association, and their husbands. All of us owe a tremendous debt of gratitude to what they have accomplished!

K: What are you most excited for during our 2014 Conference?
D: I am most excited about everyone coming together! There is so very much from which to choose, but basically it all comes down to the people who attend. Our sense of "community" is what makes us strong and what helps us grow.

K: What can attendees expect for the Patient/Family Led Sessions during Conference?
D: The Patient/Family Led Sessions at the 2014 Conference will be a mix of old and new. This year, we have made a very good effort to tap panelists that have not sat on previous panels. We have also made an effort to emphasize the diversity of the PH community, such as the diversity of age, gender, associative diseases, geographic location, etc. We have tried to address the interests of Generation Hope, newly diagnosed patients, long-term survivors, families, and Spanish-speaking patients in the sessions we have planned. I would like to remind everyone that the Patient/Family Led Sessions are an opportunity for patients and family members to share ideas with each other.

K: Will you be bringing anyone along to this 2014 Conference?
D: My mom, Mary Jo, is my primary caregiver, and she will be coming with me to the 2014 Conference. She has attended the Conferences in Orlando [2012] and Orange County [2010].  Each time she has volunteered to help out. Not many people know it, but my mom was the very first official registrant for Conference 2014! I want to encourage everyone to volunteer to help out in some capacity. You would not believe how much volunteering enhances the Conference experience!

K: Is there anything else you’d like to share with the PHA community?
D: I would like to remind the PHA community that we are a "community.” We each individually have a terrible disease, but together, we share a common interest – to find a cure for pulmonary hypertension. While we search for that cure, we can help ourselves and each other with improving our daily lives. One way I work to improve my own daily life is to find something to enjoy in what could be a horrible day, week, month or year. I encourage all of you in the PHA community to look for something good to get you through the rough times we all face. Find a way to celebrate each day!

 
Posted by:
Kristie Link
Publications Intern, PHA

'Wall of Hope' Spreads Inspirational Messages at Conference

At our 2012 Conference, PHA hosted a “Wall of Hope," where patients, caregivers and medical professionals could leave inspirational messages for others in the PH community. The 2012 Wall of Hope asked attendees to answer the question: "What does Conference mean to you?” This question yielded a variety of responses from attendees, from personal examples of their own PH journeys, to words of wisdom and tales of new PHriendships that blossomed as a result of being involved with PHA and Conference.

On the "Wall of Hope," many attendees said Conference meant that they finally got to meet other people who understand their condition and understand what they are going through. Others said that at Conference, they felt as if they were surrounded in an inclusive environment of people who care and understand them. The word “understand” was used in so many responses – which just shows how valuable networking at Conference is!

To many attendees, Conference also meant “PHriendship." It is truly powerful that at Conference members of the PH community get to meet their “PHriends” in person, who they may have only previously been able to speak to through email or Facebook. Attendees said that these friendships have helped them immensely in their PH experiences, and the love and support they are able to gain from these relationships is what helps to make Conference so special for them.

Many of the Wall of Hope quotes also said that Conference meant learning a lot about PH while they were there. From hearing about others’ experiences with PH to learning about new and innovative treatments currently being researched and developed, Conference attendees feel as though they are “in the know,” and as if they are keeping connected with the latest happenings in PH, by attending Conference.

Below is a sampling of some of the great quotes from the 2012 Conference Wall of Hope:

“What Conference means to me…”

• “Conference means support, PHriendship, and love!”
• “Being at Conference means I traveled across the country on an airplane for the first time since I got PH. It means smiling at people who return my smile rather than stare at my oxygen tube or feel sorry for me because I have an IV pump.”
• “Conference means…meeting others who UNDERSTAND!"
• “Conference is a great way to feel like I’m just one of many. Here I’m not different!”
• “A lot! I love being able to see the people that I chat with. PHA has helped me learn and connect with others. I love to learn and feel comfortable enough to ask questions. It helps to make me feel more comfortable about my research.”
•  “I’m a ten-year survivor and I dearly wish that I knew about this ten years ago – It’s amazing, a little overwhelming, and just heartwarming. I look forward to see what’s around the corner.
• “Conference is an opportunity to empower others with our experiences and knowledge of PHA. There is a happiness that overcomes you just knowing that you are in the presence of such strong survivors that all have the same purpose…which is HOPE.”
• “Conference means there is freedom in the future for patients with this disease.”
• “Conference is inspiration and aspiration for me. Meeting new and old PHriends and PHamily. A few days to feel like we belong to something so much bigger than PH. A time to remember the power of one and PHenomenal hope.”
• “Conference is an amazing opportunity to be a part of something big. Sometimes my family can’t understand what I go through, but my PHamily does. This support has helped me through some dark times. Conference allows me to visit my PHriends who have become PHamily. I found HOPE when I started losing it.”
• “Empowerment!”
• “We are not alone.”

So… What does Conference mean to you? 

Share your thoughts by posting a comment below!

Posted by:
Kimberly Smith
Patient & Caregiver Services Intern, PHA