Generation Hope Goes to Indianapolis

by Kiara Tatum

It's almost time... conference starts on Friday, June 20.  And as people are traveling to Indianapolis for this year's conference, I see many postings from Generation Hope about their travels on Facebook. I'm very excited to meet up with PHriends that I haven't seen in two years, meet new PHriends, and see PHriends in person for the first time.  I"m a bit nervous about flying again.  My family isn't able to attend with me to conference, so I'll be traveling alone.  So as we all check in to the conference over the next days, don't forget review your conference program book.  There are many sessions centered around young adults that we hope you will attend.  There's also a special meet up for Generation Hope.   Generation Hope After Dark will be held on Friday, June 20, 8:30pm.  I hope you'll make it out. Previous Generation Hope After Dark in Florida was a lot of fun!  Brittany Riggins wrote about Generation Hope After 2012 in a previous posting.  This year we're adding a little game which you can win prizes, so you don't want to miss this one.  Join us for an evening of fun!!!

Safe travels to everyone!

My First Time At Conference

By Kiara Tatum

 

Kimberlee Ford & Kiara Tatum

Despite being diagnosed in March 2006, this was the first year that I felt like I could really go to conference.  I could travel, take a plane and meet my phriends that have supported me through the years.  However, wanting to go wasn’t the problem; there were some challenges that I would have to overcome in order to get to Florida for the PHA International Conference.

Applying for the PHA conference scholarship was the first step and the easiest part of the traveling experience.  I was granted a scholarship; however, I wasn’t prepared for the extra cost.  I thought I was going to have plenty of funds from the scholarship, but the scholarship usage was explained, and I had to come up with more funds.  I thought my family was vacationing with me; however, my mom changed her plans.  I needed 4 LPM of supplement oxygen; however, my local oxygen company only supplied 3 LPM.  I needed oxygen delivery in Florida, but I used a local oxygen company in New York.  So you see all the dilemmas I had to experience, and I hadn't even left for Florida yet.  But even though I had these troubles, I still was determined to get to Florida for the PHA International Conference this year.  With help from my parents with extra money and transportation to the airport, a discussion with my PH specialist about decreasing oxygen levels while in flight, coordination with my local oxygen company with another company in Florida, everything was put into place.  

Kiara Tatum & Colleen Schnell

I was so excited about going to conference, but as the flight date approached, I became scared and anxious.  I had never traveled alone before, and now I was traveling alone, diagnosed with PH, and using supplement oxygen.  What if there was an emergency?  How would I handle it?  What hospital would I go to?  But I was determined to go.  Traveling there was okay if I don’t count almost passing out while waiting for wheelchair assistance to board the plane.  The flight was smooth, and I was able to watch a free movie, “This Means War” with Reese Witherspoon.  Loved that movie!  While sitting in our wheelchairs outside the airport waiting for the super shuttle to Renaissance Hotel, I met a fellow support group leader, which made the ride to the hotel very enjoyable.  Although I had three items confiscated at the Orlando International Airport, the return flight home was even better due to a kind and helpful woman who sat next to me.  

Kiara Tatum, Kimberlee Ford, Kia Allen & Tammy Lewis

When I arrived at the Renaissance Hotel and met up with good friend, Kevin Roberson, I finally felt relief.  My oxygen hadn’t been delivered yet, but I still wanted to go to the Meet-and-Greet and meet my friends.  Then I saw Tammy Lewis, Alex Flipse, and other friends that I had met previously.  Because we had never met in person before, I was very excited about seeing my good friend, Kimberlee Ford.  She and I had been talking for years on the phone.  When I finally saw her face, I had to touch it to make sure she was real.  And I was so excited to meet my other good friend, Kia Allen, who was bringing her husband and son with her.  I met people from PH Family Facebook page and there were so many other people that I got to meet.  But if I list them all, you will stop reading the blog.  It was the best feeling to be surrounded by people who were just like me – diagnosed with PH and full of hope.  It truly felt for the first time I wasn’t alone anymore.  Everyone describes the conference as a family reunion, and it’s so true.  These weren’t just friends; we are family.  

All the sessions I attended were informative, and one in particular was full of laughs.  The women’s only session was a blast.  Even though there were laughs, there were real issues that women of all ages who have PH have to deal with, and I’ve been avoiding relationships because of my illness.  Wearing oxygen tubing isn’t hidable, and I felt like I would be a burden on someone if we started a relationship.  But hearing some of the women’s stories was very inspiring, and I’m ready to start dating.  I also had the opportunity to be part of the speaker panel for the Words for Wellbeing session.  I shared how journaling and now writing for the Generation Hope Blog have helped me and empowered me in my fight against PH.  I was nervous, but everyone said they didn’t see it.  People gave me positive feedback, and they enjoyed the tips I shared about journaling.  

Kevin Roberson & Kiara Tatum

There was so much to do at the conference.  I attended the Support Group leader luncheon, and it was great to see so many leaders from different states and even different countries.  I went to the Generation Hope After Dark event and had a great time hanging out with friends.  I had a fun time visiting the different booths at the exhibits, from the makeup station to the photo booth station.  I may have spent a little too much time at the photo booth trying to get a decent picture.  The fashion show was so entertaining from the co-hosts to the models.  The opening ceremony speeches, the Power of One Dinner speeches, the Journeys Luncheon speeches, Scaling Mountains to Achieve Our Dreams Breakfast speeches were very inspiring and empowering.  There was so much to experience, and I wanted to experience it all.  I made new friends and grew closer to my good friends.  I didn’t get to go to Sea World because of tropical storm Debby; however, I did get to experience Thai food for the time with Joshua Griffis and Colleen Brunetti.  With the money saved, I was also able to buy souvenirs for my family at home.  

Kia Allen, Wendy Bondy, Kylen, and Kiara Tatum

I didn’t just want to go to the PH conference; I needed to go to this conference.  It empowered me and renewed my hope and faith.  I’m still so filled from the conference, and it has been over three weeks since it happened.  If you have never been to a conference, you really should see what you can do to get to the next one. You should talk to your doctor and your family and apply for a PHA conference scholarship.  I can’t wait until 2014 for the next conference; Indianapolis here I come!

Generation Hope After Dark 2012

By Brittany Riggins

Advisory Board Members

In 2006, I attended my first PHA International Conference in Minneapolis, MN.  I had only been diagnosed for about 9 months at that time.  While I had been attending my local support group meetings, I had yet to meet another patient even close to my age.  So at conference, I sought out the few other patients from across the country that were also in their 20's and affected by PH.   We bonded, spent a lot of the conference together and promised to keep in touch.  The thing that I couldn’t understand was that I had been continually told that pulmonary hypertension primarily affects women in their 20's and 30's.  So where were all the patients my age? Why weren’t they at the conference or the support group meetings?  Why wasn’t there some way we could all come together and help each other deal with this disease that was thrown at us at such a pivotal time in our lives?  Fortunately I wasn’t the only one seeing this gap in the PHA programming.  With the help of the wonderful staff at PHA, three other young adult patients and I were asked to be on the advocacy board for what would become Generation Hope in 2009.  And it was like we suddenly weren’t alone anymore.

Due to an unfortunate combination of pay cuts, long plane rides and general bad timing, I was unable to attend the previous International Conference in California.  It was the first conference that held sessions and programming just for the young adult group.  It broke my heart to be missing it, but after seeing all the photos from the Generation Hope After Dark mixer, I was so proud to have even had a small part in encouraging so many young people to come together at conference.  It was announced that the next conference would be in Orlando -- a much more reasonable trip from my home in Atlanta --, so all that was left was to wait two years.

As conference started up, I connected the names and photos I had seen so many times on the Generation Hope list serve and Facebook with the actual people.  I had done this in the past with friends from the PHA message boards, but it was so much more exciting this year.  We had a party to look forward to!  Generation Hope members were given metallic purple slap bracelets -- if you're in your 20's or 30's you remember what those are -- in their registration packets as their pass in, but by the end of Friday night you could see them shooting across the bar.  There was a chocolate fondue fountain, a selection of tiny delicious desserts, and even a specialty cocktail created just for the event.  The Generation Hope After Dark mixer was such a raving success that I never bothered to count how many patients attended, I barely took photos, and I didn’t get to bed until 2:00 am the next morning.  Seeing so many young patients from across the world in one place bonding and sharing stories was something I never thought I’d get to see.  There was easily 50 of us; all with the same concerns and hopes about life, love and fighting PH.  We had a presence and now a voice.  

The most surprising part of the After Dark event was our unexpected party crashers.  They came in the form of a high school aged mob.  A mob sounds like they had torches and pitchforks, but you know what I mean.  They were eager to try out the chocolate fondue fountain, or so I thought.  A lot of these kids have been battling PH a lot longer than some of us and will soon be joining us in Generation Hope.  While we were hesitant to let them in  -- do their parents know they’re going to be around a bunch of rowdy, drinking, 20 and 30 something --, in reality they are our future.  As much as we want to, none of us are going to be allowed to stay in Generation Hope forever.  Eventually, we will have to pass the torch onto this next group, who I feel like were elementary school age just a blink of the eye ago.  I look forward to the new energy and ideas they will bring with them.  

LtoR Chanda Causer, Brittany Riggins, Dalia Golchan,
Colleen Brunetti, Carl Hicks, and Jack Nino

I left this conference feeling more than inspired.  I left with a fire inside of me.  There are so many ideas running through my head of how we can make Generation Hope After Dark even better in 2014 -- it’s in Indianapolis if you haven’t heard --, how we as Generation Hopers can spend more time together at conference, and how I can see all these new friends without waiting until 2014.  Also on my mind is how we as Generation Hope can make a difference in the fight against pulmonary hypertension beyond the support we give one another.

Young Adult Advisory Board: Driving Generation Hope Home

By Sean Wyman

Sean Wyman

During 2009 things were changing at PHA, and questions were being asked of the young adult patients on how PHA could better serve those who utilize their service. I was privileged to be a part of a focus group conference call with several young adults who have pulmonary hypertension, and we were being asked questions on how PHA could better serve us and others like us. I think at that moment was when things started to take place and soon after this conference call, myself and several others received emails asking if we would like to be part of the Young Adult Advisory Board for PHA. The goal of the Young Adult Advisory Board was to help develop programs for young adults and young professionals in their 20’s and 30’s.  Many of us have different needs than the children and older adult counterparts. Throughout the last two years, the Young Adult Advisory Board has helped bring forth the Generation Hope Google group, Facebook page, blog, and other resources for young adults with pulmonary hypertension.

Lindsay Nicol

Colleen Brunetti

 The advisory board consists of several young adults who are active in the community raising awareness and are advocates for pulmonary hypertension. Colleen, Brit, Lindsay, Sean (me), and our newest addition Josh have been working within our communities—online, locally, and beyond—to help enrich the lives of others that are much like ourselves, young adults that want not to be defined by our PH, but to inspire others to continue to fight and continue to hope. Colleen summed it up best when she said, “I helped start Generation Hope because I wanted to give back to the community and create a safe space where people our age could gather and share similar experiences.” Personally, I share the same sentiment, and I know that Brit, Josh, and Lindsay feel the same way. We work closely with Chanda at PHA to continue to provide ideas on how to improve PHA and Generation Hope services for young adults.

Brittany Riggins

Joshua Griffis

In closing, we on the Young Adults Advisory Board are here for you and always welcome comments and ideas. If you’re fortunate enough to be joining us at the 10th International PH Conference and Scientific Sessions, and you see us, let us know what you think. Finally, Colleen, Brit, Lindsay, Josh, and I would like to invite you out to Generation Hope After Dark on Friday, June 22, 2012 at 9pm. We hope that you’ll come out and meet with us and other young adults like you.  Rumor is a Special Generation Hope Drink will be availabe for purchase. We look forward to seeing you there!

Getting Excited For Conference!

By Melanie Kozak

How would I describe the International PH Conference? It’s like going to a family reunion, only it’s with the relatives that you like.  It’s the strangest yet best feeling ever.  You get to meet all of your friends that “live in the computer”.  You also forget that people normally look at you as disabled because when you look around, you see that everyone is the same as you.  It’s overwhelming in a great way.

I get very inspired by the patient led sessions; it’s so nice to hear other people’s stories that are so similar to mine. It starts to make me feel less alone and I enjoy sharing my story as well.  It shows me that PH may be a rare disease, but that we are not only a community but a family.  It reminds me of why I fight every day.  It re-energizes me to go out and start trying to spread awareness for PH and fundraise.  It also reminds me that I need to accept my bad days and continue to be positive.

The doctor led sessions are amazing.  My favorites are the ones on the upcoming treatments.  I love to hear what other options may be available soon.  I was diagnosed 14 years ago, and there was only Flolan.   It excites me to watch more and more treatments get approved over the years.  It’s just the best feeling.  I was given six months at diagnosis, and then two-five years after that.  I know it’s a story we all hear, but seeing these new medications makes me feel like this disease is going to be cured in my lifetime.

This will be my fourth conference, and I get more involved each time.  I volunteer, I speak, I help lead a support group and I always love to model.  I remember hearing in 2008 about Gleevec, and a few months ago I got the opportunity to actually go speak to the scientists, doctors and researchers of the company! 

This year I am especially looking forward to meeting up with Generation Hope friends.  It is going to be great to speak with other people in my age group that have similar challenges as a young adult.  I am happy to say that I am a panelist on the “Making PH Sexy” session, which is all about managing relationships while having PH.  I think it’s going to be a great panel with lots of interesting points of view.  Hopefully the patients in the room will really get involved and have fun with this topic.

I also love the fashion show.  Silly as it may seem, it’s always fun to model in the show and watch how everyone else either hides or accessories their pump or oxygen.  It just has so much energy.  I especially love to see the children model.  It is great that they are able to do this and not be afraid.  Here is a teaser - this year I will be wearing my PH awareness outfit and a very special outfit, but you’ll have to be there to see it!  Okay if you are not, I will post pictures afterwards.

 As I write this I feel like I could get up and start packing.  In my eyes conference can’t come soon enough!  It gives me a high being around so many other patients.  It’s great to get ideas from them about their support groups and many other things.  The only down side is that conference only comes every OTHER year.  I would love to have a conference every year.  It truly makes me sad when conference comes to an end. 

Hopefully I will get to meet all of you next month!!!