tag:blogger.com,1999:blog-20732190029996232252024-03-05T17:54:50.148-05:00The Checkered Flag ChroniclesPHA's 2014 International PH Conference and Scientific Sessions | Racing Toward a Cure | June 20-22, 2014 | Indianapolis, Ind., U.S.A, JW MarriottPulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.comBlogger36125tag:blogger.com,1999:blog-2073219002999623225.post-21285696322514318252014-06-22T13:00:00.000-04:002014-06-22T13:00:02.943-04:00Save the Date for 2016!<div class="separator" style="clear: both; text-align: center;">
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<b>Join us in Dallas, Texas, June 17-19 in 2016!</b></div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com1tag:blogger.com,1999:blog-2073219002999623225.post-33338455546326455552014-06-22T12:00:00.000-04:002014-06-22T12:00:01.960-04:00What's Next?<div class="separator" style="clear: both; text-align: center;">
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Another PHA Conference has ended! It's sad to have to leave all of our PHriends and the fun and education we had this weekend. You can continue your education on <a href="http://www.phassociation.org/Classroom" target="_blank"><i>PHA Classroom</i></a> (patients and families) and <a href="http://www.phassociation.org/components/GetUserID.ashx?redirect=http://www.phaonlineuniv.org" target="_blank"><i>PHA Online University</i></a> (medical professionals), where all the recordings will be posted in the coming months. If you were inspired by Diane Ramirez to get involved, <a href="http://www.phassociation.org/GetInvolved" target="_blank">check out our website for a ton of ideas and tools</a>.<br />
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Thank you to everyone, especially our volunteers and sponsors, who made Conference possible.Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-3795317739986881452014-06-22T10:00:00.000-04:002014-06-22T10:00:00.137-04:00Young Conference Attendees Enjoy Saturday Field Trip<i>By Karen Lovett, 2014 Conference Reporter</i><br />
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The Children’s Museum of Indianapolis strives to create extraordinary learning experiences. Today, young ladies and gentlemen visited and showed them the power and strength of the younger attendees of the PH Conference.<br />
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With a variety of topics of interest to choose from such as China, trains, dinosaurs and the contribution of children to improving the world, there is something for almost everyone.<br />
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Today’s visitors have a few suggestions. Maren, from Alabama, found a love of dinosaurs when she saw the cast of dinosaur bones. Dev, from Ontario, thinks the Take me to China exhibit was the most fun. Jalen, from Missouri, loved the Egypt archeology exhibit. Cameron, from Oklahoma, thinks that the Fireworks of Glass exhibit was something you just can’t miss. Many of the young attendees, like Julia from Alabama, picked The Science Works exhibit as their favorite – especially Israel, from New Mexico, who built his own boat. All of these powerful young attendees seemed to have had a blast.<br />
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To learn more about the museum, visit its website at <a href="http://www.childrensmuseum.org/" target="_blank">www.childrensmuseum.org</a>.Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-91187488085338829462014-06-22T09:21:00.001-04:002014-06-22T09:21:32.738-04:00PHers Strut Their Stuff at the Fashion Show<i>Written by Marylin Hanft, 2014 Conference Reporter </i><br />
<i>Photos by Karen Lovett, 2014 Conference Reporter</i><br />
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Put 10 makeup and hairstylists, 29 models and a dozen or so PHA staff members in a large room, and what do you have? The 2014 Conference Fashion Show! As everyone filed into the backstage area with 2 1/2 hours to go to showtime, controlled chaos ensued.<br />
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The estheticians worked their magic on hair and makeup, turning every model into a beauty. PHA staff member Chelsea and her staff kept everything moving as we all donned our first outfits and nervously got in line. "I'm FIRST?! But I'm not even sure what I'm doing!" "You'll do fine. Relax and enjoy the fun." I took that advice to heart, relaxed and had one of the most enjoyable times of my life.<br />
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Cute kids, mostly girls, emerged from the hairdressers' chairs sporting gorgeous curls, got into adorable outfits, and got in line. Ladies who had arrived without makeup or fancy hairdos were transformed into runway-ready beauties, first donning casual wear then more formal attire.<br />
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The lone male in the groups arrived wearing his purple zebra cape and hat with panache (<i>pictured right</i>). Our MCs, Debbie and Lucas, did an awesome job of reading the scripts that participants had provided and leading the "Where's the pump" game.<br />
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Out of chaos came laughter and a show that went off without a hitch. The audience cheered us on and made all of us feel very special. Ornah in her wedding gown made a lovely end to the show as we all gathered around her for our final bow.<br />
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What fun we had! What memories we take away!Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com1tag:blogger.com,1999:blog-2073219002999623225.post-5743882517432472802014-06-22T08:55:00.000-04:002014-06-22T08:55:08.767-04:00Team PH Crosses Finish Line a Day Earlier Than Expected!Team PHenomenal Hope crossed the finish line on their 3,000 mile Race Across America last night a good day earlier than expected. PH community members gathered at the finish line in Annapolis, Md., and via Skype from PHA's Conference in Indianapolis, Ind., to cheer them on and congratulate them on such an amazing feat. You women are truly amazing!<br />
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Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-85762215269840261522014-06-21T16:31:00.003-04:002014-06-21T16:31:40.209-04:00PH Community Interview: Perry MamigonianSupport group leader and pulmonary hypertension patient from Fresno, Calif., Perry Mamigonian shares what he loves about Conference.<br />
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Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-33898371308573710062014-06-21T14:30:00.000-04:002014-06-21T16:40:30.860-04:00PH Community Interview: Support Group Leader and PH Patient Aletha EllisonWe caught up with Aletha Ellison, a pulmonary hypertension patient and support group leader, in the Exhibit Hall by the blogosphere. Aletha shares her PH story and what she enjoys most about Conference.<br />
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Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-49617525658205071732014-06-21T11:27:00.001-04:002014-06-21T11:27:42.968-04:00Conference Brings the Community Together<i>By Karen Lovett, 2014 Conference Reporter</i><br />
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Wow! What a great first day! Walking down the hallways or riding on the elevator, we have had opportunities to meet many interesting people. That alone would have been enough reason for some to come to the 2014 International PH Conference. Luckily, the fun did not stop there.<br />
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The day started off with a feeling of belonging. The morning Meet-ups allowed a chance to meet others with similar situations or interests. The Newly Diagnosed and Long-Term Survivors were both popular places to hang out. As new people came and went from one group to another, the discussions flowed fairly seamlessly from one story to another. As Tiffany Gunderman shared, "People share their stories and find hope in other's experiences."<br />
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The Conference Opening was a favorite of many attendees like Jasbir James. Leaving the Grand Ballroom, people could be heard saying how much Jeannette Morrill's story touched them. Their story may be very different, but they still recognized some of the same feelings of fear and hope for the future.<br />
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Attendees were empowered as they scurried from place to place and session to session, willingly stopping to talk or answer questions. The one thing that stood out is that no one person was alone. Whether they were attending their first Conference or their eleventh, they were not the odd person in the group. They had a friend that had been there. Even better, the Conference is just getting started. Saturday is looking to be another fun-filled day.Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-11363758456463784502014-06-20T22:56:00.002-04:002014-06-20T22:56:44.344-04:00Inspirational Song from Chloe Temtchine and her Oxygen Tank "Steve Martin"Chloe Temtchine, a singer, songwriter living with pulmonary hypertension, sang her PH anthem "Be Brave" at PHA's 2014 Conference opening today.<br />
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Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-45245141570567894422014-06-20T22:52:00.002-04:002014-06-21T16:37:26.063-04:00PH Community Interview: Dr. Michael McGoonDr. McGoon talks about how he got involved with pulmonary hypertension, what he likes about working in PH, and why he participates in Conference. He was recognized at the dinner today because he is retiring this week. A 2015 research award will be named in his honor for all his years of service the the PH community and the field of pulmonary hypertension.<br />
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Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-71311556733055208522014-06-20T22:37:00.004-04:002014-06-21T16:35:16.212-04:00Conference Attendees Meet Up with Team PHenomenal Hope<div class="separator" style="clear: both; text-align: center;">
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As of 10 p.m. on Friday night, Team PHenomenal Hope is cycling through the mountains of West Virginia, closing in on their final destination of Annapolis, Md. Continue to track their progress on <a href="http://www.phassociation.org/TrackTeamPH" target="_blank"><b>our tracking page</b></a>.<br />
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Late Thursday evening, community members from PHA’s International PH Conference traveled to Bloomington, Ind., to cheer the team on as they cycled through (<i>see the photo right</i>).<br />
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As PHA President Rino Aldrighetti says, “Team Phenomenal Hope is inspiring the PH community. ... We talk about medicine as science and, sometimes, art. What Dr. Patty George and her team are doing takes us to a new level – inspiration. The PH community is with them every turn of the pedal, every mile of this race for our lives.”Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-67688693084078715742014-06-20T18:00:00.000-04:002014-06-20T18:00:02.389-04:00Meet Our PH Heroes<div class="WordSection1">
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This PHamily reunion that we have every two years is a great opportunity to
recognize some of the outstanding contributions that individuals have made to
our shared cause. At the dinners tonight and tomorrow we will introduce
a group of remarkable members of our PHA PHamily.</div>
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Our PH heroes this year have accomplished the following feats. Read more about them in the <span style="mso-bidi-font-style: normal;"><a href="http://www.phassociation.org/document.doc?id=2610" target="_blank">program book on page 36</a>.</span>
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<li>PH mother helped with local support
group and annual fun walk</li>
<li>PH mom who is a PH Email Mentor</li>
<li>Created super hero capes for pediatric patients</li>
<li>Has spearheaded PHA’s PH Care Centers initiative</li>
<li>These women know how to throw a party, with a
DJ, raffles and a candle-lighting ceremony<span style="mso-bidi-font-family: Georgia; mso-fareast-font-family: Georgia;"><span style="mso-list: Ignore;"></span></span></li>
<li><span style="mso-bidi-font-family: Georgia; mso-fareast-font-family: Georgia;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"></span></span></span>Without any direct connection to PH, co-leads a
support group and helped create a third group in Puerto Rico</li>
<li>Raised more than $200,000 at their 2013 event</li>
<li>Founded and leads the Long Beach Support Group</li>
<li>Has organized an annual fun walk for the past 11
years since 2003</li>
<li>Created “Just Breathe” Lung T-shirts and posters
and regularly blogs about living with PH</li>
<li>Event organizers who raised hundreds of
thousands of dollars for research along with a strong partnership with the
local Chamber of Commerce</li>
<li>Has helped found three major medical programs at
PHA</li>
<li>Organized the largest 5K in Louisiana history
that raised more than $130,000</li>
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Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-76505433086537445822014-06-20T16:00:00.000-04:002014-06-20T16:00:01.029-04:00Going All Out in the Race Toward a Cure<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKl88NVFJteTJjSRB0cgiuKMVwTg0dibVI_Yr-e5hW8PnUVcABN6PUzLqdyf_8F7u4O4OjXT-AW3mwmuD6NOQCkytpKLIift89sCS5fwtVv4HYGhTtN04ZWZ4-F6gdJ7NaoiTCs-aXHTg/s1600/JB2_2007.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjKl88NVFJteTJjSRB0cgiuKMVwTg0dibVI_Yr-e5hW8PnUVcABN6PUzLqdyf_8F7u4O4OjXT-AW3mwmuD6NOQCkytpKLIift89sCS5fwtVv4HYGhTtN04ZWZ4-F6gdJ7NaoiTCs-aXHTg/s1600/JB2_2007.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jeannette Morrill</td></tr>
</tbody></table>
A few International PH Conferences ago Carl Hicks, who is now PHA’s Executive Vice President, gave a speech about “Hope is a Verb.” He articulated our community’s tradition of fighting back against this devastating disease in the best way we know how – each of us doing our part in big and small ways. We are a small disease state, but through the combined efforts of individuals, each racing toward a cure in their own way, we can - and have - accomplished a lot. At today’s Conference opening we saw just how powerful our collective spirit can be.<br /><br />First, we saw a video from Team PHenomenal Hope, a team of four women and their crew, including Dr. Patty George from UPMC, who are on a literal race for a cure. While we enjoy Conference, they are competing in the world’s toughest cycling race, the Race Across America (RAAM), across 3,000 miles and 170,000 vertical feet of elevation from one end of the country to the other. For the past two years they have been training and raising awareness and funds for the cause. Throughout Conference we will be making announcements to Conference attendees with updates on the team and where they are in their cross-country trek. You can follow Team PH at <a href="http://www.phassociation.org/TrackTeamPH" target="_blank">www.PHAssociation.org/TrackTeamPH</a>.<br /><br />Next, PH patient Jeannette Morrill (<i>pictured right</i>) gave the Conference opening keynote about her journey, or “road trip,” with PH, which began 38 years ago when she was diagnosed in 1976. She talked about the pit stops and challenges she has had to overcome, who her pit crew is and what her hopes are for the future. In the race for a cure, Jeannette fights back as a support group leader, event organizer, advocate, speaker and Conference committee member. She also published a book about her life with PH called <i>Living with Pulmonary Hypertension: 34 Years and Counting</i>. <br /><br />Then as a special treat, PHer Chloe Temtchine sang her PH anthem “Be Brave.” You can purchase her song on iTunes, and half the proceeds will be donated to PHA.<br /><br />What a way to get this PHamily reunion officially kick started!Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-61034547273322165082014-06-20T10:00:00.000-04:002014-06-20T10:00:00.607-04:00Meet-and-Greet: Fun for All!<i>By Marilyn Hanft, 2014 Conference Reporter</i><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBjXOnkZGqWulyuSwyopU_6vEpi0ixCD_JBy6u5LFJgc1Y_8i2CYYeHTbfV5HMuJYWgY6i5iYnXrAHQrMorPWAz6zWe8Mt7tN3i32IhTpRm1wZiQIHJjAfXFvoNdSEUApSpz8JVUr-MhI/s1600/IMG_2324.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBjXOnkZGqWulyuSwyopU_6vEpi0ixCD_JBy6u5LFJgc1Y_8i2CYYeHTbfV5HMuJYWgY6i5iYnXrAHQrMorPWAz6zWe8Mt7tN3i32IhTpRm1wZiQIHJjAfXFvoNdSEUApSpz8JVUr-MhI/s1600/IMG_2324.JPG" height="240" width="320" /></a></div>
As a first-time Conference attendee, I wasn't sure what to expect at the Meet-and-Greet. Once I – finally – found the right room (follow the noise of bunches of people all talking at once), I was amazed to see so many people who, like me, are wearing oxygen. To no longer feel “different” was a gift I didn’t expect. Amazingly, the many wheelchairs and motorized scooters seemed to blend into the crowd.<br />
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Wandering around, taking in the exhibits, I met so many nice, friendly people; I quickly felt right at home. There was Jimmy, a caregiver for his wife, checking in ahead of me. We went our separate ways, but I caught up with him again at the buffet. I met a younger woman who was only diagnosed a couple of years ago and several who are long-term survivors.<br />
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Each story was different, yet we all share a similar path.<br />
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A group gathered around each exhibit, talking to the staff and each other, sharing the experience. At one end of the room was a long table with items being raffled off. I was particularly surprised to see a basketball autographed by Larry Bird – my all-time favorite player! Someone else won it.<br />
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And so, my evening ended – tired and looking forward to three more days.Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-40306711727508117102014-06-18T11:53:00.005-04:002014-06-18T11:53:50.292-04:00Coming to Conference? Join the Conversation!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVhMpOos98nEXjJGQMYn14nh_lP8vl8_fyHTeAxsmleRKpzL8Gw1GfIS4UabbBiZ1-OSqnh3yqEed3B8SU8UsPBo_b3XjKmhckJtGvR7_70MlLEbx6PjhtLnP-eqaCtGun8DjzHoRlLoQ/s1600/whispering.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVhMpOos98nEXjJGQMYn14nh_lP8vl8_fyHTeAxsmleRKpzL8Gw1GfIS4UabbBiZ1-OSqnh3yqEed3B8SU8UsPBo_b3XjKmhckJtGvR7_70MlLEbx6PjhtLnP-eqaCtGun8DjzHoRlLoQ/s1600/whispering.jpg" height="213" width="320" /></a></div>
If you are attending Conference, please share your Conference stories,
photos and videos on Twitter, Instagram or our <a href="https://www.facebook.com/PHAConference2014" target="_blank">Conference Facebook page</a>
and be sure to mark them with the <b>#PHAIndy</b> hashtag. To the right you can read live feeds from Twitter and Facebook to follow the conversation<br />
<br />
We will be reporting from Conference here on the "Checkered Flag Chronicles" Conference blog. We will be including video interviews of attendees like you.<br />
<br />
See you in Indianapolis!Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-62772790672908191722014-06-03T11:20:00.000-04:002014-06-03T11:20:00.019-04:00ALERT: Conference Registration Closes June 6<!--[if gte mso 9]><xml>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCGD2v63iaFNOwrnH0ciigxy4CdGtJyQufgV3e1UDtU8m_FvId4z2IRUCETzIexLeGm5W5fDc73N1nUcIjJUK7XC8qucjkGme6aDW3o1R4eX0z7Y96av5HULiM8bawifB2yfYBZYmm3tg/s1600/Conference2012_Registration.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCGD2v63iaFNOwrnH0ciigxy4CdGtJyQufgV3e1UDtU8m_FvId4z2IRUCETzIexLeGm5W5fDc73N1nUcIjJUK7XC8qucjkGme6aDW3o1R4eX0z7Y96av5HULiM8bawifB2yfYBZYmm3tg/s1600/Conference2012_Registration.jpg" /></a></div>
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PHA’s 2014 International PH Conference and Scientific
Sessions is only 17 days away! <b style="mso-bidi-font-weight: normal;">If you
haven’t registered yet – there is still time left. </b>More than 1,200 PH
community members have already registered to attend this unique educational and
networking event taking place June 20-22 in Indianapolis, Ind.</div>
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In 2012, we had an overwhelming response to registration.
With more than 1,500 people registered to attend our 2012 Conference, we had to
close online registration and start a waiting list. Space is limited, so
register now to reserve your spot!</div>
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<a href="http://www.phassociation.org/Conference/Registration" target="_blank">Register Now </a></div>
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<b style="mso-bidi-font-weight: normal;">Online registration
will be available until Friday, June 6 at 3 p.m. ET. </b></div>
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For questions about registration, contact
<a href="mailto:Registration@PHAssociation.org">Registration@PHAssociation.org</a> or call 301-565-3004 x763.</div>
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Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-91747241618789539962014-05-27T10:24:00.000-04:002014-05-27T10:24:00.017-04:00ALERT: Conference Program Book Available Online<!--[if gte mso 9]><xml>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic27bH09uj_vYt5PYWGdAM1H_8zC-3KtUMkPneQluCXJfSjl32qvpLSpzB3qnZAu9Y2s05nZqWt2O9vKuQFi7C8Q3Th_HMBDxyAyv7ebkPbU-IKIgfnWSUsDlSWs7W3cSckk902JZ6p4E/s1600/PHA_ProgramGuide_FINAL_Web.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic27bH09uj_vYt5PYWGdAM1H_8zC-3KtUMkPneQluCXJfSjl32qvpLSpzB3qnZAu9Y2s05nZqWt2O9vKuQFi7C8Q3Th_HMBDxyAyv7ebkPbU-IKIgfnWSUsDlSWs7W3cSckk902JZ6p4E/s1600/PHA_ProgramGuide_FINAL_Web.jpg" /></a>Our Conference program book is still printing – but we
wanted you to get a sneak peek now! A PDF copy of the program book is now
available to view and download on our website.
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<a href="http://phassociation.org/document.doc?id=2610" target="_blank">View the Conference program book</a> (PDF) </div>
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You will receive a copy of the program book in your attendee
bag given out when you check-in at Conference registration in a few weeks!</div>
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This program book will be your guide to the weekend,
providing session times, session names, speakers, maps of the hotel and more. </div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-22398721291448326922014-05-16T10:15:00.000-04:002014-05-16T10:15:00.661-04:00Mix and Mingle at Conference<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-wC8iKkx16XkG7NkMOyQXE6PrKJjPfJeXImP4aCTie0_6cdxci3CkvtvG1kE5AXDFpu-nn_pNmMdKj9pqoKmRj49_EIwGDkOG32Vlr7pAGUPXEB7u7sXAZdYqIDB1Lfl54fA6WCGxbdA/s1600/D81_7371.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-wC8iKkx16XkG7NkMOyQXE6PrKJjPfJeXImP4aCTie0_6cdxci3CkvtvG1kE5AXDFpu-nn_pNmMdKj9pqoKmRj49_EIwGDkOG32Vlr7pAGUPXEB7u7sXAZdYqIDB1Lfl54fA6WCGxbdA/s1600/D81_7371.jpg" height="159" width="200" /></a></div>
PHA’s 2014 International PH Conference and Scientific Sessions offers many opportunities to connect socially with others just like you! From a Meet-and-Greet and Meet-ups to Support groups and more, there is plenty of chances to network among educational sessions. Check out a few targeted networking events that will take place during Conference: <br /><br /><b>Parents’ Mixer</b><br /><i>Friday, June 20 at 6:15 p.m.</i><br />Remember how nice it was to hire a babysitter and go out with your friends? We didn’t think so. As a refresher, join other parents in the Parents' Mixer at Conference and unwind as you enjoy this adult-only event.<br /><br /><b>Generation Hope After Dark</b><br /><i>Friday, June 20 at 8:30 p.m.</i><br />Join your Generation Hope peers (ages 18-40) for conversation, fun and cocktails. You will have the opportunity to unwind with the new generation ready to right PH in a casual setting after a day of educational sessions!<br /><br /><span style="background-color: blue;"><span style="background-color: white;"><span></span><i><b><span style="color: blue;">NEW!</span></b></i></span></span> <b>Long-Term Survivors Mixer</b><br /><i>Friday, June 20 at 8:30 p.m.</i><br />Mix and mingle with others who have been living with PH for the long-haul over cocktails.<br />Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-81835521972900470352014-05-14T09:14:00.001-04:002014-05-14T09:14:11.578-04:00ALERT: Last Chance to Submit a Note of Thanks<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh4W5JmxX2LR8OXHbot-rBCLpwezzbUJvDDCVIq2i9XPetqDM_h2CKLZW_lGeSMGjqe_qQoVNv5k3UYjFNx745RFE8SMFcf2Ie6w_r_fpDgQDRZq4g14KcyyEtPP1z1QHSYlwy_l800ro/s1600/Conference2014_NotesOfThanks.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh4W5JmxX2LR8OXHbot-rBCLpwezzbUJvDDCVIq2i9XPetqDM_h2CKLZW_lGeSMGjqe_qQoVNv5k3UYjFNx745RFE8SMFcf2Ie6w_r_fpDgQDRZq4g14KcyyEtPP1z1QHSYlwy_l800ro/s1600/Conference2014_NotesOfThanks.jpg" /></a></div>
Many people are affected when your life or the life of your loved one has been touched by PH. Acknowledge those who’ve made a difference in your life with a <a href="http://www.phassociation.org/Conference/Notes" target="_blank">Note of Thanks and Remembrance</a> in PHA's 2014 Conference slideshow. Even if you aren’t attending Conference, you can make your appreciation or memories known to the more than 1,500 attendees expected to attend.<br />
<br />Each note is $25 (50 word max.) and all proceeds benefit the Conference Scholarship Fund. <br /><b> </b><br />
<b>Act now, the deadline to submit a note is May 15 by midnight!</b><br />
<br />
<a href="http://www.phassociation.org/Conference/Notes" target="_blank">Submit a Note of Thanks and Remembrance</a>Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-91030785814927168282014-05-06T15:15:00.002-04:002014-05-06T15:15:35.705-04:00Special Invitation: PHA Fashion Show<b>Who: </b>YOU!<br /><b> </b><br />
<b>When:</b> Saturday, June 22, 4:30 p.m. – 5:30 p.m.<br /><b> </b><br />
<b>Where: </b>Indianapolis, Ind. – PHA’s 2014 International PH Conference and Scientific Sessions<br /><br />
You are invited to attend the <a href="http://www.phassociation.org/Conference/FashionShow" target="_blank">PHA Fashion Show</a> – where patients of all ages will walk the runway showing off unique ways of hiding or flaunting their pump, oxygen and more. Make sure you grab a seat to see your PH friends proudly strut the runway. Who knows – the next Tyra Banks, Heidi Klum or Tyson Beckford may be among the mix!<br />
<br />The PHA Fashion Show is an event that many attendees look forward to at each International PH Conference. The PHA Fashion Show tradition began at the 2002 Conference as a workshop demonstrating how to hide pumps, tubes and other medical devices using handbags, scarfs and other fashionable items. That first workshop was presented to a packed room, with standing room only – so it was obvious that there was a need for the information! Soon after, the workshop was expanded into a full fashion show, led by Rynna Ollivier, a PH patient and former model. The full fashion show format continues today, and draws a tremendous crowd at each Conference!<br />
<br />Want to know what to expect at the PHA Fashion Show? Check out this special highlight video from our 2010 Conference:<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/2a7Wy9lpkmE?feature=player_embedded' frameborder='0'></iframe></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPUgP32SqGrQrBO-GfF7EfAgQvrqk96L4g4wkwl0n3gB-oXz6PJZFu3EBcJHoHMAA8Rjd4WB_-cq3q0BsxFRqatW5WxLZl14108uRDRA6nNxt45AVcDTvmQS9MSG_-RSKKqiVAmDws9PI/s1600/86px-PHA-logo-no-title.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPUgP32SqGrQrBO-GfF7EfAgQvrqk96L4g4wkwl0n3gB-oXz6PJZFu3EBcJHoHMAA8Rjd4WB_-cq3q0BsxFRqatW5WxLZl14108uRDRA6nNxt45AVcDTvmQS9MSG_-RSKKqiVAmDws9PI/s1600/86px-PHA-logo-no-title.gif" /></a><b><br />Posted by:</b><br />
<b>Kristie Link</b>, Publications Intern, PHA<b><br />Suzanne Flood</b>, Marketing & Communications Manager, PHA<br />
<br />Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-80111696029613601042014-04-29T14:50:00.002-04:002014-04-29T15:06:31.241-04:00Two Community Members Honored with Julie Hendry Memorial AwardJulie Paton Hendry, daughter of PHA founding members Pat and Jerry Paton, was the
first full-time, non-patient PHA volunteer. Every two years, she looked forward
to PHA's Conference as an opportunity to meet the PH patients and families
she talked with by telephone and email. Sadly, Julie passed away in 1998. Her
family established the Julie Hendry Memorial Scholarship Award in her memory to
help a non-patient volunteer attend Conference. This award is given to two PHA
members who actively support PHA.
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This
year, <b style="mso-bidi-font-weight: normal;">Mary Felkel</b> and <b style="mso-bidi-font-weight: normal;">Anaelis Padilla</b> are the proud recipients of the Julie Hendry Memorial Award. Both women have been
extraordinary members of the PH community.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT1VJcBHcSlhRlIIfqsU5gbsetUfgHUo-15oLZRpA6fHXt0wsd-fybAt5uV5BuzUjvwCoBZYTHieF9KOiyJc6WPY8B0zjQBbPHcaiPyRMBYDFR0Iv5KO64FHxK9RMVKeru4nNEspj3FN8/s1600/AnaleisMary.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhT1VJcBHcSlhRlIIfqsU5gbsetUfgHUo-15oLZRpA6fHXt0wsd-fybAt5uV5BuzUjvwCoBZYTHieF9KOiyJc6WPY8B0zjQBbPHcaiPyRMBYDFR0Iv5KO64FHxK9RMVKeru4nNEspj3FN8/s1600/AnaleisMary.jpg" height="215" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mary Felkel (left) and Anaelis Padilla (right)</td></tr>
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We were able to interview these two before they head off to Conference. Read on to
hear what they had to say.</div>
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<b style="mso-bidi-font-weight: normal;">Kristie [PHA Publications Intern]: What
has been your experience with Conference? What are you most excited for?</b></div>
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<b style="mso-bidi-font-weight: normal;">Mary:</b> I have attended all 10 Conferences, so I’ve had the experience of watching it grow into what it is
today and yet maintain the essence of the first one. It’s a time to network
with patients, caregivers, family members, doctors, nurses, researchers, and
others who are involved in dealing with this disease. What I look forward to the
most is reconnecting with old friends, meeting new ones, and finding out the
advances that have been made towards finding a cure.</div>
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<b style="mso-bidi-font-weight: normal;">Anaelis:</b>The first time I
had the opportunity to attend a PHA Conference was in 2010. I went to
California with the expectation of learning new things, meeting other PHers and
to gather information to share with the community. What I received in return
was a better understanding of PH, meeting new people and a big opportunity of
changing other’s life just by sharing the information received at Conference. In
2014, I am excited the meet other Support Group Leaders, new friends, share
ideas and exchange memories of my journey as part of the Caparra Wellness
Center PH Support Group. I am looking
forward on gathering a lot of information for those patients, family,
caregivers and friends who can’t be at Conference.</div>
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<b style="mso-bidi-font-weight: normal;">K: What have you done for the PH
community? How are you involved?</b></div>
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<b style="mso-bidi-font-weight: normal;">M:</b> Over the years I have helped my
daughter, Sally Maddox (a 24 year PH survivor), with support group meetings and
her annual Walk For a Cure, which has raised more than $100,000 for research and
patient support. At Conference I’ve donated blood for research, facilitated
support groups for parents of adult patients, served as a room host and worked
in the PHA Store. I’ve also made monetary donations and travel to play in two
golf tournaments that raise funds for PH.<br />
<b style="mso-bidi-font-weight: normal;">A:</b>I have been Co-Leader of the
Caparra Wellness Center PH Support group since it was founded almost five years
ago. We create cards, distribute PH information at health fairs, malls,
schools, churches and workplaces. I have planned reunions, met with new
patients and families, gathered articles and stories to share with caregivers
and general public about pulmonary hypertension.</div>
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<b style="mso-bidi-font-weight: normal;">K: Why did you decide to get involved
with PHA?</b></div>
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<b style="mso-bidi-font-weight: normal;">M: </b>I became involved with PHA
because my daughter is a patient. PHA
has been a source of support for our family since we first learned of its
existence in 1991.</div>
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<b style="mso-bidi-font-weight: normal;">A:</b> I decided to get involved with
PHA because I met a couple of patients at my pulmonologist’s office. I am not a
PH patient but I was hospitalized eight times in less than a year for my asthma and
bronchitis. Because of this, sometimes I had my visits at the same time the
PHers did and we became friends. I learned about PH and decided I will get
involved in any way possible to spread the word about the condition. I
also wanted to pay back the care and dedication of doctor Hector J. I am very
thankful for all he has done and how involved he is with all of his patients. I know that PH is very important to him, so I
decided to be part of a support group. From the beginning, this journey has
been a big learning experience that will never end.</div>
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<b style="mso-bidi-font-weight: normal;">K: How do you feel about receiving this
award?</b></div>
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<b style="mso-bidi-font-weight: normal;">M:</b> I am honored to receive this
award. Julie’s family has been an inspiration to me over the years for all
they’ve done to help find a cure, while
at the same time giving support to all those touched by PH.<br />
<b style="mso-bidi-font-weight: normal;">A:</b> I cannot believe that I am
receiving the Julie Hendry Award. I am so surprised because I feel I do so
little when others people say I do so much. I am very proud and honored to
receive this recognition.Some
members of our support group told me that I should apply for the award. Personally, I felt what I have done wasn’t even near to the point of being
recognized. Then when Julia Friederich and Joshua Griffis of PHA visited Puerto
Rico, Julia insisted I apply because I do a lot of things for the PH
community. "You are what that award is all about," she said.</div>
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<b style="mso-bidi-font-weight: normal;">K: What is your most memorable moment
while working with the PH community?</b></div>
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<b style="mso-bidi-font-weight: normal;">M:</b> My most memorable moment was
sitting at my daughter’s bedside in an ICU room as she Skyped with people attending
the 2011 GA Fun Walk. We have an awesome support system of family and friends
who hosted the event she worked so hard to plan. They proved this by doing it
again in 2013 when Sally had to be admitted to ICU on the day of the walk.<br />
<b style="mso-bidi-font-weight: normal;">A:</b> If I have to choose one specific
moment I had while working with PH it has to be the smile of one special guy that
unfortunately lost his battle to PH. He went to one of our meetings and I told
him “just do things differently, don’t give up on doing things you love." I
didn’t know Julie Paton Hendry, but from my experiences I know how she must
have felt while working with the PH community.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3W41sjF6xax8Rg1zSBv1gcU5vPoStClQV_mjE4VM8Aa-8ms_ndzZUYhC8erM0HR2xIDNrCpUVdT53HNcgF9YhF8lMOdqKKBStQ5HQQColWppq_ddTwUpjiC4q-_CJ9Ohz1ZGbZnpPE5c/s1600/Kristie+Link.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3W41sjF6xax8Rg1zSBv1gcU5vPoStClQV_mjE4VM8Aa-8ms_ndzZUYhC8erM0HR2xIDNrCpUVdT53HNcgF9YhF8lMOdqKKBStQ5HQQColWppq_ddTwUpjiC4q-_CJ9Ohz1ZGbZnpPE5c/s1600/Kristie+Link.jpg" /></a></div>
<b>Posted by:</b></div>
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<b>Kristie Link</b></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
Publications Intern, PHA </div>
Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-27994468362703454212014-04-24T12:31:00.000-04:002014-04-24T12:31:00.254-04:00Throwback: PH Patient, Kirsten Larson, Vlogs from Orlando in 2012Hear it best from a Conference veteran. In this 2012 video blog, PH patient, Kirsten Larson, talks about how Conference has evolved each time through the seven times she’s been. She even met new PHriends and talked with them into the wee hours of the next morning!<br />
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<i>"Each year it [Conference] gets better and better because we keep growing more and more and Conference has more than doubled since I started coming..." <span style="font-family: "Cambria","serif"; font-size: 11.0pt; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS Mincho"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast; mso-hansi-theme-font: minor-latin;">–</span> Kirsten Larson </i><br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/6QFWqLo4RII" width="560"></iframe>Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-3874891384929883322014-04-22T13:22:00.000-04:002014-05-02T08:17:13.118-04:00Sights and Attractions of Indianapolis<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii0Ww4YR5GLwpA_q8esU8qTGbsPFD2KRoGQAYU8f_Sw8ZZ6i_ArZKw3jhjYbYOUxrMVQkfbHe_y1nzH-wP8Gj8NtyXIP2YkCHAYT5O6XankH3p6hCFT7AB8sg__fQxtCj-N8aSGLBBkbM/s1600/Indyblog.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii0Ww4YR5GLwpA_q8esU8qTGbsPFD2KRoGQAYU8f_Sw8ZZ6i_ArZKw3jhjYbYOUxrMVQkfbHe_y1nzH-wP8Gj8NtyXIP2YkCHAYT5O6XankH3p6hCFT7AB8sg__fQxtCj-N8aSGLBBkbM/s1600/Indyblog.jpg" height="200" width="200" /></a></div>
As you are registering to attend PHA’s 2014 International PH Conference in Indianapolis, you are probably wondering what makes Indy so special. Indianapolis is a thriving city and beautiful place to plan a family vacation or a singles retreat. We all know that Indianapolis is home to the NFL Indianapolis Colts, but the city has a variety of attractions for everyone! Don’t believe us? We spoke to the local Indianapolis PH Support Group members and asked for their top picks of attractions in the area. <br />
<br />
Here’s what they had to say: <br />
<br />
<i>“I’m in Indy, and I highly recommend the museums: <a href="http://www.eiteljorg.org/" target="_blank">Eiteljorg Museum of American Indians and Western Art</a>, <a href="http://www.imamuseum.org/" target="_blank">Museum of Art</a>, <a href="http://www.connerprairie.org/" target="_blank">Conner Prairie Interactive History Park</a>. And our <a href="https://www.childrensmuseum.org/" target="_blank">Children's Museum</a> is known as the best in the country. There’s also a great variety of arts and entertainment downtown and around Indy, too, for the young adult crowd.”</i><br />
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<![endif]--><span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: Calibri; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">– </span>Natalie Tolley, PH Parent, Indianapolis, Ind.<br />
<br />
<i>“White River State Park is in downtown Indy and just across the street from the [Conference hotel] JW Marriott Indianapolis. The park has many acres with a beautiful zoo, museums, five memorials, world-renowned Imax theater, a beautiful canal with paddle boats, gondolas, bicycles, segway tours, fountains, and free summer concerts! We are also home to Circle Center Mall, a three-floor Simon mall with many great restaurants and stores. And all of this is within walking distance of the Marriott.”</i><br />
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<![endif]--><span style="font-family: "Calibri","sans-serif"; font-size: 11.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: Calibri; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">–</span>Cindy Battiato, PH Caregiver, Indianapolis, Ind. <br />
<br />
Other Sites to consider:<br />
<ul>
<li>Indianapolis Motor Speedway</li>
<li>Indianapolis Zoo</li>
<li>NCAA Hall of Fame</li>
<li>Dallara IndyCar Factory</li>
</ul>
For more tips on planning your visit to Indianapolis this summer, visit <a href="http://www.phassociation.org/Conference/Travel" target="_blank">our Conference website</a>.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiFzpiDi1uHdAlvphPWnuKkp5bHI6j5qVPVHkcouGBc5_3FBwkcPrq4S0RhFK0o8g2E-Huye55SCylEdJPYa8iNE47DXkfoX7qQDy_9OAyvxLpZ3S70t_10h8d-G6kManhA149R-t7qlY/s1600/Brianah.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiFzpiDi1uHdAlvphPWnuKkp5bHI6j5qVPVHkcouGBc5_3FBwkcPrq4S0RhFK0o8g2E-Huye55SCylEdJPYa8iNE47DXkfoX7qQDy_9OAyvxLpZ3S70t_10h8d-G6kManhA149R-t7qlY/s1600/Brianah.jpg" /></a></div>
<b><br />Posted by:</b><br />
<b>Brianah Lewis</b><br />
Web Services Intern, PHAPulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-16129296353066947042014-04-17T15:46:00.000-04:002014-04-17T15:46:00.313-04:00Throwback: PHA Roving Reporter Takes on 2012 ConferenceFood. Fun. Friends. That sums up the exciting Patient and Family Meet-and-Greet from our 2012 Conference. PHA Roving Reporter, Nicole Northrop, took to our 2012 Conference Blog to describe the scene filled with tons to do and see! <br />
<br />
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<i>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.</i><br />
<br />
<a href="http://tabletalkwired.blogspot.com/2012/06/attendees-mix-and-mingle-at-meet-and.html" target="_blank">Read Nicole's full blog post from our 2012 Conference</a>Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0tag:blogger.com,1999:blog-2073219002999623225.post-59127321187859397362014-04-15T12:42:00.000-04:002014-04-15T12:42:00.346-04:00PHCC: Raising the Quality of Care for All PH Patients<!--[if gte mso 9]><xml>
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<![endif]--><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih2Tu_Dt9GXK_HN8a1etO0cl-rmIwMoFBW90h8_BSvbJeejxJoxai_OeyXLgnAEF9vNosmQFak3NisM-ZjWnGlgWI-mrW5m_czqF7fxNmv-mBU-CBpDZM-azUGqVJH-TMYbvyj2JBJLjo/s1600/PHCC_Logo.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih2Tu_Dt9GXK_HN8a1etO0cl-rmIwMoFBW90h8_BSvbJeejxJoxai_OeyXLgnAEF9vNosmQFak3NisM-ZjWnGlgWI-mrW5m_czqF7fxNmv-mBU-CBpDZM-azUGqVJH-TMYbvyj2JBJLjo/s1600/PHCC_Logo.jpg" height="100" width="200" /></a><i><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">At PHA’s <a href="http://www.phassociation.org/Conference" target="_blank">2014 International PH Conference and Scientific Sessions</a> in
Indianapolis this June, patients, caregivers and medical professionals will
have opportunities to learn and share additional information about the PHCC
initiative. </span></span></i></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"> </span> </span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">PHA is pleased to
announce a new chapter in the diagnosis and management of pulmonary hypertension:
the PHA-Accredited Pulmonary Hypertension Care Centers (PHCC) initiative. Since
2011, the PHA Scientific Leadership Council (SLC) and a subcommittee, led by
Dr. Murali Chakinala and including more than 40 physicians, non-physician
clinicians, patients and caregivers, have sought to develop a program to
identify medical centers with special expertise in treating PH. The primary
goal of this program is to raise the overall quality of care and outcomes in
patients with this life-threatening disease. </span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">At PHA, we frequently
receive inquiries from cardiologists and pulmonologists who are interested in
treating PH but are unsure how to organize a robust PH program correctly and
efficiently. We now have a resource to provide them! In the near future,
medical centers treating pulmonary hypertension will be invited to apply to
become a PHA-Accredited PH Care Center. Successful applicants will be placed
into one of two levels of accreditation based on the depth of all resources
available to the PH program. These levels will be defined as: </span>
</div>
<ul>
<li><span style="font-family: Symbol; font-size: 12.0pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"></span></span></span><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">PHA-Accredited
Center of Comprehensive Care (CCC)</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">: a highly organized,
full-time PH center that proficiently evaluates PH patients based on published
evidence-based guidelines and provides expert treatment of patients with all of
the FDA-approved therapies. CCCs also make important contributions to PH
research and education</span></li>
<li><span style="font-family: Symbol; font-size: 12.0pt; line-height: 115%; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;"><span style="font: 7.0pt "Times New Roman";"></span></span></span><b style="mso-bidi-font-weight: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">PHA-Accredited
Regional Clinical Program (RCP)</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">: a regional PH Center
that proficiently evaluates PH patients and provides expert treatment with all
non-infused therapies. An RCP must collaborate with its regional CCCs by
referring patients who may benefit from opportunities unavailable at the RCP,
including the initiation of infused therapies and participation in clinical
trials.</span></li>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEAJgS8Cvs1NQEspnqwJU2yWKH3CIcJpLUy_hA388YdneedIlfPVyLF-IFg23f9m1jXs__zsrU6z3pPC17KmOGujuTunMMn-UEP7tvYD9Dq3CfuJ4y2hJaveYi5Y1_8L3rjpXXein2jkQ/s1600/photo8329.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEAJgS8Cvs1NQEspnqwJU2yWKH3CIcJpLUy_hA388YdneedIlfPVyLF-IFg23f9m1jXs__zsrU6z3pPC17KmOGujuTunMMn-UEP7tvYD9Dq3CfuJ4y2hJaveYi5Y1_8L3rjpXXein2jkQ/s1600/photo8329.jpg" height="146" width="200" /></a></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">What
Does the PHCC Initiative Mean to Me?</span></i></b></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">PHCC is meant to be another tool in your fight
against PH. When fully implemented, PHCC will be a network of expert clinicians
who you can either see directly or who your medical team can contact when
optimizing your care.</span> <span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">This includes a cohesive medical team,
verification that diagnoses are made correctly and appropriate treatment
started, as well as explicit institutional support for the pulmonary
hypertension program.</span></div>
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<br /></div>
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<a href="http://www.phcarecenters.org/"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">View
the full criteria list</span></a><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"> for Centers of Comprehensive Care
and Regional Clinical Programs. Applications are expected to open and full site
visits to begin in the second half of 2014, and we anticipate that it will be
several years before all qualified and interested sites have an opportunity to
be processed for accreditation.</span></div>
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<br /></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Where
Can I Go for More Information?</span></i></b><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"> </span></div>
<ul>
<li><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><b>Online:</b> The </span><a href="http://www.phcarecenters.org/"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">PHCC website</span></a><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">
is regularly updated with more information on the initiative and what it means
for you.</span></li>
<li><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><b>An upcoming webinar:</b> Drs. Michael McGoon, Erika
Berman-Rosenzweig and Murali Chakinala will lead a webinar on April 30, 2014,
to discuss the PHCC initiative. There will be time for Q&A at the end. </span><a href="http://www.phassociation.org/PHCCPatientWebinar"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Register for
this webinar now</span></a><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">. If you are unable to join, a recording
of the webinar will be placed in </span><i><a href="http://www.phassociation.org/Classroom"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">PHA Classroom</span></a></i><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">.</span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"> </span></li>
<li><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><b>PHA's 2014 International PH Conference:</b> During Conference in Indianapolis this June, we will have even more opportunities to
share additional information about the PHCC. </span><a href="http://www.phassociation.org/Conference"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Register for Conference
now</span></a><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">.</span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"></span></li>
</ul>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDLzckdnJf24V1XafHYT8QPDjRxFjjiuuv6C5U86qkZjo6L5WvX2wPMJVg3QZTUl-fd8S2BgP2lbx6eB5BmPJLccdGtJdRVNWFiXjyRC28IZ-u8xkDGRM60CURNAQLuyo9WjZmgSpCLVQ/s1600/60px-PHA-logo-no-title.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><br /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFQLf5xHNiWaBDKTEitz3fEBBJsnUbirv62ilVvFKw62ZqCHpxsZwcOx12-Uy-EqFGCuk7EwHjkaRVTtf8-wIvhb6Qoc0tbFuJbuuQ2em5byKqFi4pSvK-BK1E4G0U3DUsVJ8NXRm_zrY/s1600/86px-PHA-logo-no-title.gif" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFQLf5xHNiWaBDKTEitz3fEBBJsnUbirv62ilVvFKw62ZqCHpxsZwcOx12-Uy-EqFGCuk7EwHjkaRVTtf8-wIvhb6Qoc0tbFuJbuuQ2em5byKqFi4pSvK-BK1E4G0U3DUsVJ8NXRm_zrY/s1600/86px-PHA-logo-no-title.gif" /></a></div>
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><b>Written by:<br />Michael Gray</b>, Director of Medical Services, PHA</span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><br /></span>
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><b>Olivia Onyeador</b>, PHCC Program Manager, PHA</span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><br /></span>
<b><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Posted by: <br />Kristie Link</span></b><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">,</span><b><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"> </span></b><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Publications Intern, PHA</span><br />
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;"><br /></span></div>
<br />Pulmonary Hypertension Associationhttp://www.blogger.com/profile/06555335337762103542noreply@blogger.com0