Generation Hope #StillPHighting

by Generation Hope Advisory Board

November is a PH Awareness month, and many of you have been wearing awareness bracelets, t-shirts and hats, posting selfies, changing profile pics and names, and other things to bring awareness to PH. But we're still "PHighting", and we can't do it alone. We need help from Congress to join us in the "PHight".

Thursday, November 13th is National PH Advocacy Day. PH Association is hosting a Congressional Luncheon; however, if you're unable to attend, you can still get involved. Create a selfie-video and share it. Email your video to AngeliaD@phassociation.org, and it will be posted to the PHA's YouTube Channel. Share the video with your family and friends and encourage them to make their own videos. And don't forget to add #PHAware when you post your video.

Then on November 13, post your selfie-video to your senators' and representatives' Facebook pages. Check out the video that Generation Hope Advisory Board created:




For more details and a guided script for your selfie-video visit PHAssociation.org/stillphighting

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!

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!