Education, Friends and Excellent Ambiance

by Delia Rivera, PH patient

I am so happy to say that I was able to attend the conference in Orlando, Florida, and I was honored to have taken a friend of mine who is also a patient and is a member of our support group that my husband Michael started in Corpus Christi, TX. She had never been to a conference, and I had been to the one in Houston so I had some experience and I was more than happy to show her the ropes.

We were blown away when we entered the hotel, the ambiance was excellent. I would rate the hotel with five stars and not to mention the staff. "Oh my god,” I have never felt so welcomed and they were so hospitable. I met Debbie Castro (she’s one busy lady). I also met so many others.

I learned so much at the conference. It was very educational, and we had a lot of vendors from different pharmaceuticals who were very informative. I was also asked to be a mentor for patients on Tyvaso since I happen to be on it and of course without hesitation I said yes. I love being able to help out hers who need help or just need someone to talk to.

I will try really hard to attend the one in Indianapolis. If you didn’t attend the conference I strongly suggest you attend the next one, you will love it. Thank you to the Pulmonary Hypertension Association for putting together the conferences. I know we all appreciate your dedication. Thank you to all the sponsors for the grants they donated to help us go to these conferences!!!!

It Brought Me Joy

by Josephine Alvarado

This was my first time conference. It was very informative and all the staff and volunteers were outstanding.

I was hesitant at first to attend but I am glad that I did. So much information and so many people from all walks of life with this same illness. I brought back to Corpus Christi, TX, a lot of information and hope that one day with god's graces a cure will be found. Come Sunday I was sad having to leave this wonderful conference -- it brought me joy.

Too Many Favorite Things

Here is how Kiara Tatum responded to Alex Flipse's Facebook Question of the Day, "What was your favorite thing about conference?"

Too many favorite things. Meeting my sisters that I have been talking to for years & spending time with them. Meeting with PHriends that I have known on Facebook, the great sessions, the fun, the laughs, those fast lizards, the fashion show, the dinner ceremony, and everything was just what I needed for me to continue to have hope & feel empowered despite having PH. I can't wait 'til 2014. I'm so there!!!

We Can Make It Happen

by Mary Jo Piatek

Wow, what a great experience this conference was for me. I learned and understand this disease so much better now. I would like to thank the PHA, I was a lucky person to receive a scholarship for the conference, without it, it may have been a problem to get there. I went with my sister, both of us were glad we went. She even said she understands this disease a little bit better as well as understands the way I feel.

It's such a big world out there and sometimes you think you are all alone, but now I know that is not the case. Talking to different people, and knowing we are all in it together.

I can't say enough about the PHA and the hard work and dedication they put into this, I'm happy I joined and to be a part of it.

I do wish the disease could be caught much earlier and one day there be a cure for it. I was diagnosed 2 1/2 years ago and never heard of it before. I guess you can say it was a new beginning. Sometimes it's still hard to accept. I know there were some people a lot worse off than me and some were so much better. All the speakers were great, the Dr's & nurses were just as great.

Once again I thank everyone who is involved -- you're doing a great job and it shows. I hope to attend the next conference in Indiana as well. Keep up the great work and thank you again. It was an experience I will never forget.

WE CAN MAKE IT HAPPEN

Fourteen-Year-Old Mountain Climber Raises Awareness About PH

Fourteen-year-old Matthew Moniz of Boulder, Colo., has astonished the world by being one of the most accomplished young mountain climbers. At only 9 years old, he completed his first expedition, climbing to Everest Base Camp at 17,200 feet and a summit of Kala Patar at 18,501 feet with his climbing partner and father, Mike Moniz.

Since then Matt has continued his passion for climbing and was named one of National Geographic’s Adventurers of the Year in 2010. His enthusiasm and bravery have led him to set the world record for being the youngest person to climb Mount Elbrus, the highest point in Europe, and Cerro Aconcagua, the highest point in the Americas. Matt set another record for climbing every United States high point in just 43 days (50 states in 43 days) — the fastest time on record! He is also the youngest person to accomplish this feat.

Not only is Matt devoted to climbing and breaking records, he is also devoted to friendship. Matt’s best friend, Iain Hess, was diagnosed with primary pulmonary arterial hypertension in 2005 at the tender age of 5. Iain and Matt are like brothers and grew up as next door neighbors. However, as a result of Iain’s PAH, he had to move to a new home at a lower altitude. The distance has not separated the two and they are still closer than ever. Although Iain cannot climb all of the mountains Matt can, he climbed three Flatirons and made it to the very top of the third. The two were featured on “The Morning Show” on CBS.

Since Iain has PAH, Matt has a very unique way of raising awareness about pulmonary hypertension by climbing mountains. He shared all about it at the PHA Tomorrow: Scaling Mountains to Achieve Our Dreams Breakfast this morning.

PHers Strut Their Stuff in the Fashion Show

Posted by
Diane Greenhalgh
PHA Director, Web Services

One of the fun traditions of Conference is the Fashion Show where PHers show off how they hide or display with flair their pumps and other medical equipment. This year, the event was hosted by PHA Volunteer Services Director Debbie Castro and PH kid Lucas Van Wormer. PHers showed off their PH awareness gear, casual clothing, evening wear, and even a little Spiderman who showed of his Spiderman trick.

Let Me Breathe

Posted by
Diane Greenhalgh
PHA Director, Web Services

PHA's Conference is an international event. The weekend started off on Thursday with an International Leaders' Summit for association leaders around the world. This weekend has included other events for international patients and medical professionals alike, including a reception, regional meetings and a strategy meeting. Yesterday, J. Paul Adams, a composer from Canada, presented a music video he had created with PHers in Canada. You can watch the video and add your name to the map at www.letmebreatheph.com. The work that PHers around the world are doing is being shared at the International Booth in the Exhibit Hall (right).

Video Blogs from Stu, Dijon and Carmen about Their Favorite Experiences

 Watch as Stu, Dijon and Carmen tell us about some of their favorite experiences at Conference so far.

Kirsten's Favorite Thing

This is Kirsten's seventh Conference and she shares some of her feelings about Conference, and tells us about her favorite thing so far here in Orlando.

Delia and Pain Warriors

Delia Moro traveled from Puerto Rico to attend Conference. She talks about her Conference experience and invites you to visit her Facebook page, PH and Pain Warriors: www.facebook.com/PhAndPainWarriors

Pam Stoked about Third Conference

by Pam Pedersen, PH caregiver

Today has been a most awesome day of learning. Talking with the doctors about medical issues becomes more helpful and more meaningful with each conference. I am here for the 3rd time (Houston, L.A. and Orlando Conferences). The best conference session for us as a couple (my husband has come for the first time) was the Familial/Genetics and PAH session. Drs. Elliott, Chung, Loyd and Wheeler were upbeat and hopeful for the future. There are so many possible new options in the wings for us as PH families. Hope really is a verb. I'm so Stoked!!

Scholarship Recipient Learns about PH

by babyfaceshellie, PH patient

hi all my name is Michelle i am from Tucson, AZ i got a scholarship to come. i am learning a lot a bout p.h.a., it's really fun here i think everyone should get to come at least once. its a once in a lifetime thing.

Standing Room Only at Medically Led Sessions

Posted by
Diane Greenhalgh
PHA Director, Web Services

The Medically Led Sessions, which are presented by experts in the field of pulmonary hypertension for patients and caregivers, began this morning with a bang. We have some great topics and some sessions were standing room only they were so popular. One session, the "Investigational Therapies/Stem Cell in PH - What's on the Horizon" was flowing out the door (see right). Some of the topics today and tomorrow include:

• Basics of PH: Everything You Wanted to Know about PAH, but You Have to Ask
• Guinea Pig or Hero - The Journey through Clinical Trials
• Defensive Dining: Eating to Maintain Health and Avoid Complications - How to Eat Smart
• Surgery and Anesthesia in Patients with PH: What You Should Know
• Emergency Situations and Primary Care Issues
• PAH Drug Development: The Pipeline Runneth Over
• Diagnostics in PH - What Do All the Tests Mean?
• PH in the Setting of Liver Disease - What Makes it Different?
• Teeth, Bones and Other Surgical Problems for Kids with PH
• Education for the PH Caregiver

All sessions will be available on PHA Classroom in a few months for everyone to view.

From the Famous Kitchen Table

Posted by
Diane Greenhalgh
PHA Director, Web Services

This year's Conference theme is The Power of One: From the Kitchen Table to Around the World. The Pulmonary Hypertension Association began by four women meeting around a kitchen table in Florida. Our 10th International PH Conference and Scientific Sessions has brought us all back to Florida where we were founded, and at the Conference opening yesterday we got to see the famous kitchen table and the three remaining women who sat around the table at that original meeting: Pat Paton, Dorothy Olsen and Judy Simpson.

Last night at dinner it was an amazing sight to see the huge ballroom filled up. As one of the speakers pointed out, we had gone from one kitchen table to 140! The kitchen table is displayed in the Exhibit Hall, and you can see me above taking in this precious moment.

More Video Blogs, or Vlogs, from Conference

Terry, Karen and Sharon say a few words about their Conference experience.

PH Community Connects at Meet-ups

By Nicole Northrop, PHA Roving Reporter

Friday morning, the Crystal Ballroom was filled with Conference attendees, all looking forward to meeting people just like themselves. As attendees walked in, they saw tables with different colored tablecloths throughout the room. Each table was labeled with one of eight Meet-up categories: “Caregivers,” “First-time Conference Attendees,” “Generation Hope,” “Families of Children and Teens with PH,” “PHA Community,” “Newly Diagnosed,” “Patients with Associated Illnesses,” and “Facebook and PH Online Community.”

The “Caregivers” table had several people who currently care for their loved ones. Wendy Foss, caregiver for her husband, Jerry, says that caregiving, although it’s stressful and tiring, is fulfilling because you are caring for the ones you love. The “First-time Conference Attendees” table was quite large, as many people have never been to a PH Conference before. One attendee, Elizabeth Rost, is attending Conference for the first time even though she has had PH for four years. The “Generation Hope” table had several young adults standing around it, all talking about PH. The “Families of Children and Teens with PH” table was populated with children enjoying the arts and crafts provided at the table. Rayni Worley, a 15-year-old at the table, has had this illness since she was 4.

The “Newly Diagnosed” table was populated with some patients who have only had PH for a short while before Conference. The “Patients with Associated Illnesses” table had several people who deal with other illnesses along with dealing with the stresses of PH. The “Facebook and PH Online Community” was populated with many different people, since many people use the PH online communities.

All in all, the Meet-ups were a success. Attendees got to meet several people who may be very similar to them. Many people seemed to be having a great time, and these same people look forward to continuing to have a great time during the rest of Conference.

Attendees Mix and Mingle at the Meet-and-Greet

By Nicole Northrop, PHA Roving Reporter

Walking into the Crystal Ballroom at the Renaissance Orlando at SeaWorld®, one would see many booths, delicious food, eager people, and fun activities. These aspects are what made the Patient and Family Meet-and-Greet at PHA’s 10th International Conference so enjoyable. The many people crowded into the ballroom were sporting a paper carnation. Each carnation was a different color to represent the many regions in which these people live. Every person, patient, caregiver and medical professional alike, seemed to be enjoying Conference. The ballroom was filled with happy chattering with people they had met.

Everyone I interviewed seemed to be enjoying Conference very much so far. Several people were looking forward to the different aspects of Conference. Stephanie Anderson, a patient with primary PH, said that she was looking forward to meeting new people and making new friends. Her caregiver and sister, Stacy Hise, was looking forward to hanging out with her sister.

Fun and food were all around. One could dine on such things as chocolate-covered strawberries and lemonade. There were Minute to Win It games, in which participants had one minute to complete such tasks as bouncing a balloon in the air, navigating cotton balls to a bowl using their Vasoline-covered nose, and solving a puzzle of cut-up cereal boxes. There was also a table in which a woman would paint your face or make you a wonderful balloon animal. After receiving a makeover and a balloon hat, one could go over to the photo booth and take pictures with several props. A raffle was also held, in which several people won such prizes as artwork, tickets to theme parks, and chocolate.

The whole event was delightful. As the multitudes of people walked around booth to booth, they got to experience fun, food, and friends, all while dealing with the everyday struggles of PH.

And We Party!

Posted by
Diane Greenhalgh
PHA Director, Web Services

Young adult PHers, the Generation Hope, partied at a reception last night with indulgent treats and great friendship. Even after a full day, they were full of energy at the opportunity to connect with PHers their own age from across the country. While I'm at the top end of this age group, I popped in just to check it out and couldn't help but stay even though my legs were screaming to stop. This is the magic of Conference! I can't get enough of connecting with people I only get to see every two years. As the speakers said last night at dinner, it's one big PHamily reunion.

Learning New Skills to Fight Back

Posted by
Diane Greenhalgh
PHA Director, Web Services

This morning during pre-Conference activities were the first round of skill building sessions. I was a panelist for the Harnessing the Power of Your Online Social Networks session. I appear top left in the photo with the other panelists (clockwise) Pam Pedersen, Alex Flipse and Sean Wyman. They did a great job of sharing the creative ways they fight for the cause online. Among other things, Pam used a video her daughter created to educate her Members of Congress about PH, Alex posts a Question of the Day (QOTD) on Facebook for PHers to respond to that allows people to share and learn from each other, and Sean video blogs, or vlogs, about issues he faces as a student.

You can get involved online and harness your social networks for the cause in small or large ways. Get involved online

What Conference Means to Me

Reporting directly from Conference! See what Conference means to Sean, Karen, Laurie and Ellen.