What if Everyone Did a Little Something to Raise PH Awareness?

Earlier this week I wrote a blog post about an upcoming webinar focused on providing tips to help you share your PH story with reporters. On Tuesday, August 30, one of PH’s star media advocates, Kimberlee Ford, will host Increase PH Awareness and (Generation) Hope in the Media. During the webinar, Kimberlee will talk about her experience working with reporters and the tips she’s learned along the way. In this blog post, she explains why she works with the media to raise PH awareness and why she thinks you should too!

If would be great if everyone could do something to help raise pulmonary hypertension awareness. A good way to start is to speak with the media and share your PH story. I know it can be scary at times to share details about your medical history. It was for me, but I did it. If you do not do it, who will?

Your story might help another person get involved or better yet, get them to seek much needed medical attention. The goal of patients speaking to the media is to educate the world about this rare, incurable and life threatening disease. We always say that people do not think we are sick because PH is an invisible disease. This is our chance to share our voice and show others what PH looks like. The support of everyone in the PH community is needed to make pulmonary hypertension well known like other incurable diseases.

One day we will have a medical cure if we continue to spread awareness and raise funds for a cure. The media is the key to help get the word out about pulmonary hypertension and if we continue to educate more people about the disease there will be more people willing to donate for research.

I'm always looking to share with and get new ideas from the PH community, so join me on PHA’s upcoming webinar for tips for Generation Hopers on sharing your PH story with reporters!

Increase PH Awareness and (Generation) Hope in the Media!
Webinar (Web Log-in and Phone Dial-in Required)
Tuesday, Aug. 30, 3:30 p.m. ET/12:30 PT

Live a Little Louder: Captivate Reporters with Your PH Story!

We all know those people who walk into a room and get noticed. Ok, maybe it's their spiked purple mohawks, or maybe it's their confidence. Their eye contact. Their refusal to believe for a second that people will react to their presence with anything but awe. Whatever the reason, those Life-of-the-Party-Lisas have the courage to raise their voices and tell their stories so the world is willing to listen. And with just a little education about what it takes to raise awareness (you'll be surprised at how easy it is -- no mohawks or megaphones required!), even the shyest Generation Hoper can find that courage too.

Next Tuesday, August 30, PH awareness all-star, Kim Ford, will be leading a webinar to teach other young adults with pulmonary hypertension how to make themselves heard by the media to raise awareness for pulmonary hypertension. With step-by-step instructions and tips and tricks from Kim, you won't want to stay a wall flower for long.

Increase PH Awareness and (Generation) Hope in the Media!

Webinar (Web Log-in and Phone Dial-in Required)

Tuesday, Aug. 30, 3:30 p.m. ET/12:30 PT

Register now, and then tell us -- have you ever shared your PH story? If not, what would it take for you to contact your local newspaper or television station to tell them about pulmonary hypertension? A flask of magic courage potion? A teleprompter? Maybe a James Franco look-alike on the other side of the microphone?

Want to Change the World? Step 1: Identify Your Manatee

The first step to making the world a better place is choosing your cause. This is a big part of what keeps young people ticking -- figuring out how they want to channel their hopes, dreams, talents and passions to make a difference. For some people, it takes years to stumble upon their cause, be it ending global poverty or saving the ever-adorable manatee. For some of us, the issue we care about is in high definition long before we know what we want to do about it. We'll give you a hint...our cause is the one closest to our hearts.

That's right. We're talking about pulmonary hypertension,* the complex and often misunderstood lung condition that inspired the birth of Generation Hope in 2009. Generation Hope was established by a group of young people living with this disease who wanted a place to connect with other patients who were looking forward to living active and meaningful lives with PH.

In the past two years, Generation Hope has shown the world loud and clear that young adults are committed to fighting back against the disease that unites them. From Kim Ford, who organized a nation-wide day for PH awareness on July 8, to Ryan Juntti and Nicole Cooper, who joined other patients in tracking down the producers to the Dr. Oz Show to convince them to do a show about PH, young adults are willing to live, breathe, and tweet PH to tell the world why pulmonary hypertension matters.

So what do you say? Is pulmonary hypertension awareness YOUR manatee? If you're looking to channel your energy and passion passion to spread the word about PH, to your community, to the media, or to your elected representatives, we invite you to join us. A  new group is forming within Generation Hope for PH activists in their 20s and 30s. The group will learn about legislative issues that affect PH patients and caregivers, and work together to find creative ways to take action and make a difference in the fight against PH.

We’ll be hosting a kick-off call next week for anyone interested in getting involved. Email Outreach@PHAssociation.org to learn more!

*We know, we know. What else is new?