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!!!!
PHA's 10th International PH Conference and Scientific Sessions | The Power of One: From a Kitchen Table to Around the World | June 22-24, 2012, Orlando, Florida, U.S.A, Renaissance Orlando at SeaWorld
Thursday, July 12, 2012
Monday, July 2, 2012
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.
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
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
Thursday, June 28, 2012
Conference: A Phenomenal Experience for Patients and Families
By Mary Jo Piatek, PH Patient
Wow, what a great experience this Conference was for me. I learned about PH and understand this disease so much better now. I would like to thank 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. I talked to different people and know we are all in it together.
I can't say enough about PHA and the hard work and dedication the staff put into this; I'm happy I joined and am a part of it. I do wish the disease can be caught much earlier, and one day I hope we have a cure for it.
I was diagnosed 2 1/2 years ago and had 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 at Conference a lot worse off than me and some were so much better.
All the speakers were great; the Drs. and 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!
Wow, what a great experience this Conference was for me. I learned about PH and understand this disease so much better now. I would like to thank 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. I talked to different people and know we are all in it together.
I can't say enough about PHA and the hard work and dedication the staff put into this; I'm happy I joined and am a part of it. I do wish the disease can be caught much earlier, and one day I hope we have a cure for it.
I was diagnosed 2 1/2 years ago and had 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 at Conference a lot worse off than me and some were so much better.
All the speakers were great; the Drs. and 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!
An Amazing Conference Fosters Awesome Connections
By Alex Flipse, PH Patient
The Pulmonary Hypertension Association's 10th International Conference and Scientific Sessions took place this weekend, June 22-24, 2012, and it was the best it has ever been! From the Medically Led Sessions to the Patient/Family Breakout Sessions, to the Skill Building Sessions (which I spoke at), it was all AMAZING!!! Meeting all my PHriends from online - Facebook, PHFamily, Spanish Language PHriends - was the best part of Conference by far!
I met PHriends I have known online for many, many years, but never in person - Jen Lalonde, for example! Seeing phriends that I've seen at previous Conferences was awesome!!! Stuart Berwick, Diane Ramirez, Ellen Harris, Migdalia Denis, Marcia Beverly, Ornah Levy - oh so many people!!!
PHA staff was amazing, too!!! Going in to volunteer on a regular basis, I've known PHA staff for some time now, but the work and dedication I saw this weekend was well beyond the call of duty! Thank you! Thank you! Thank you!!!
The Pulmonary Hypertension Association's 10th International Conference and Scientific Sessions took place this weekend, June 22-24, 2012, and it was the best it has ever been! From the Medically Led Sessions to the Patient/Family Breakout Sessions, to the Skill Building Sessions (which I spoke at), it was all AMAZING!!! Meeting all my PHriends from online - Facebook, PHFamily, Spanish Language PHriends - was the best part of Conference by far!
I met PHriends I have known online for many, many years, but never in person - Jen Lalonde, for example! Seeing phriends that I've seen at previous Conferences was awesome!!! Stuart Berwick, Diane Ramirez, Ellen Harris, Migdalia Denis, Marcia Beverly, Ornah Levy - oh so many people!!!
PHA staff was amazing, too!!! Going in to volunteer on a regular basis, I've known PHA staff for some time now, but the work and dedication I saw this weekend was well beyond the call of duty! Thank you! Thank you! Thank you!!!
Members of PHA Australia Attend Conference
By Christopher and Vivienne, Members of PHA Australia
We feel truly privileged to have been invited and able to attend PHA's 10th International PH Conference. It has exceeded our expectations. Although we are all going our separate ways, we know that the friendships formed will continue on.
We are leaving knowing that we are now part of a wonderful PHamily. We cannot wait to get back to Australia to share with our PHamily the wonderful work being done around the world.
To the PHA team, thank you for coordinating such an amazing event. We also thank Joan Godber, our president, and the PHA Australia Committee for allowing us to represent our country at this year's Conference.
We feel truly privileged to have been invited and able to attend PHA's 10th International PH Conference. It has exceeded our expectations. Although we are all going our separate ways, we know that the friendships formed will continue on.
We are leaving knowing that we are now part of a wonderful PHamily. We cannot wait to get back to Australia to share with our PHamily the wonderful work being done around the world.
To the PHA team, thank you for coordinating such an amazing event. We also thank Joan Godber, our president, and the PHA Australia Committee for allowing us to represent our country at this year's Conference.
Tuesday, June 26, 2012
Kids’ Field Trip Makes a Big Splash
By Meera SalamahEveryone agrees that this was the best Pulmonary Hypertension conference yet, especially the kids, who were thoroughly impressed by this year's traditional field trip to Sea World! The trip was enjoyable for all ages, even those hard to please teens.
We started our trip by going back to school with educational activities that taught us about many of the sea creatures that Sea World houses, including Polar Bears and Sharks. 
The group then moved on to a walking tour of some of the animals that we had just learned about. Valerie from South Carolina says that seeing the beluga whales in the exhibit was her favorite part. The next and last attraction was of course, a Shamu show called One Ocean! Nicole, Shannon, Jen and Rayni all agree that this was their favorite part of the trip! Shamu just couldn't help but make a big 'splash'. Something interesting that I noticed was that the theme of the show was how one person can make a big difference in the world. I couldn't help but make a connection to PHA's theme, "The Power of One". This is not just coincidence, it only serves as further proof to our motto and adds strength to our message.
Thus, I encourage everyone to put the Power of One to the Test, even kids; you can make a difference despite what people might say or your age. You have that power vested within yourself, and I hope that you put it to use, whether it be as a caretaker for a sibling or a parent, or as a participant in fundraising and advocacy, the Power of One is the wave we all ride to the cure.
Sunday, June 24, 2012
See You in 2014 in Indianapolis!
Save the Date:
PHA's 11th International PH Conference and Scientific Sessions
June 20-24, 2014
Indianapolis, Ind.
PHA's 11th International PH Conference and Scientific Sessions
June 20-24, 2014
Indianapolis, Ind.
Fourteen-Year-Old Mountain Climber Raises Awareness About PH
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.
Saturday, June 23, 2012
PHers Strut Their Stuff in the Fashion Show
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.
Science and Learning for Medical Professionals
Diane Greenhalgh
PHA Director, Web Services
PHA is a unique organization in that we represent the entire spectrum of the PH community from patients and caregivers to medical professionals. Our conferences bring the entire community together for education and networking. The programming for medical professionals this weekend included the Scientific Sessions, which focused on "The Genetics of Pulmonary Hypertension." Participants were treated to the latest science presentations from experts in the field and a record breaking number of abstract posters about a spectrum of topics.
Medical professionals are also participating in PH Fundamentals sessions this weekend and doing research in the Research Room. This weekend is such an opportunity for researchers with so many PH patients in one place.
Let Me Breathe
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!!
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.
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.
Kathy Meets Someone Else with the Same Illness
by Kathy Aunean, PH patient
Excellent experience! So many vendors represented, with great information & support (besides fun freebies)! Interaction with others has been DIVINE! I've even met another person with the same illnesses/disorders as me--- we are "a rare bird indeed"! Am here on a scholarship & could not have otherwise afforded it. THANK YOU, PHA! ;)
Excellent experience! So many vendors represented, with great information & support (besides fun freebies)! Interaction with others has been DIVINE! I've even met another person with the same illnesses/disorders as me--- we are "a rare bird indeed"! Am here on a scholarship & could not have otherwise afforded it. THANK YOU, PHA! ;)
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:
Diane Greenhalgh
PHA Director, Web Services
- 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
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