PH Awareness 2015

By Kiara Tatum

I can’t believe another year has passed by, and PH Awareness Month is here once again.  During the month of November, there are many events, fundraisers, support group meetings, advocacy action, and other activities to spread PH awareness.  This is also a great time for young adults diagnosed with PH to spread as much PH awareness as we can during the month.  I know it can be difficult getting involved in attending events or hosting a fundraiser, but I’m going to share some great ways to spread PH awareness using social media.  

One social media event that goes on until November 30 is #Heart2CurePH.  It's simply printing the "Please Co-Sponsor H.R. 3520 sign" and taking a selfie or a usie with friends and family and posting it on your Facebook or Twitter page with the #Heart2CurePH.  Don't forget to post on your Members of Congress pages as well to see if they have the #Heart2CurePH by sponsoring the Pulmonary Hypertension Diagnosis and Research Act.  For more information go to Heart2CurePH Photo Campaign on Facebook.  

#Heart2CurePH Campaign is part of the 2015 National PH Advocacy Day on Thursday, November 19.  There are three ways to get involved including the #Heart2CurePH, giving your Members of Congress a call, and visiting your local legislature office.  Find out more information of Periwinkle For A Cure: National Advocacy Day here.  We are coloring the world periwinkle this month.  So change your profile pics and cover pages on Facebook to PH Awareness themes.  Can find them on the Pulmonary Hypertension Association Facebook page.

Now ladies, and the fellas too, this one is a good one.  Get out your periwinkle color nail polish and paint your nails.  It's time for the #ManiUpForACure Campaign.  Take a pic of your nails and post on social media with the #ManiUpForACure.  No periwinkle nail polish, no problem.  When you donate $20 or more to PHAware, you will be sent a bottle of nail polish, so that you can participate in this campaign.

Now another idea which is just so inspiring and amazing, I can't wait to do create mine, is record a note card story.  It'll allow you to share your PH journey to others on social media.  You can post on YouTube Channel and/or your Facebook Page.  It's a great way to share your story and spread PH awareness. Check out Shannon O'donnell's PH story.

These are just a few ways you can get involved in spreading PH Awareness to family, friends, and your community.  Do one, two or try them all.  For more details and other ideas you can always visit PH Association Awareness page. Do something this month to spread PH Awareness!

Sometimes It's PH!

Bringing PH Awareness Your Community

By Kiara Tatum

Doctors are taught in medical school that if they hear hoof beats, they look for a horse not a zebra.  Meaning if a patient is describing symptoms of shortness of breath, fatigue or other common symptoms, then doctors assume common ailments such as Asthma, Obesity or COPD.  However, we as Generation Hope PH patients know that sometimes it’s PH.  So it’s up to Generation Hope to spread the word about PH and since PH Awareness Month is around the corner in November, it’s time we take action.

 

With help from Yusetty Medina, Community Advocate Manager from Accredo, I set up an informational table at my local mall to hand PH pamphlets to crowds of people for PH Awareness Month.  The goal wasn’t to raise funds, but to raise awareness about Pulmonary Hypertension for early diagnosis.  I ordered the free pamphlets from PH Association and Yusetty brought informational brochures from Accredo.  There were also goodies to hand out: chocolate, candy and bottled water to key chains, PH Awareness bracelets, flashlights, pens, hand sanitizer and travel size Band-Aid holders.  Together we talked to many different people from the young to old about Pulmonary Hypertension.  This year, I plan to do the same, but with a little more help from my support group to have a bigger impact on the community.

Yusetty and Kiara at PH Awareness Event 2011

You can do it too.  It doesn’t take much time to organize an awareness event.  There have been a couple of Facebook events called “Show Us Your Stripes”, and that’s something that we can all do in November by posting pictures of ourselves, family, and friends wearing zebra stripes and posting pictures online and explaining to Facebook friends what the zebra stripes mean.  Another simple idea is setting up display boards for the month of November at your local community center, library, college campus, or wherever you can find a spot that will be seen by lots of people in your community.  You can also raise awareness through the media by telling your PH story with your local newspaper.  Additionally, if there is an event already planned in November, maybe you can have a table set up there about PH, such as a local school concert.  Or request an Awareness Month proclamation from your mayor and/or state governor.  There are other great ideas for you to get involved this PH Awareness month.  Check out PH Association at http://www.phassociation.org/AwarenessMonth2012 for more ideas.

I have said it before that the PH journey isn’t so smooth, but by each one of us spreading PH awareness to others, we can make a difference.  We can help others who may be experiencing symptoms of PH get the help and early diagnosis needed to stop the progression of PH.  Don’t let another November go by without doing something.  Take action!!!

Finding Your Voice

This year I’ve been learning a lot about finding my voice. Not my singing voice, that is reserved for solo car rides and the occasional group karaoke.  No, I mean my PH Voice. The voice that gives me the power to make a difference.

See, for the first year or so after diagnosis, I didn’t have much of a voice. I had a case of nausea from trying to deal with all the drama that PH brings, but wasn’t doing much about it. What could I do? I had this disease and it was supposed to side-line me before too long.

But then Generation Hope came along, and I realized that I had a lot of ideas of what I could do, and we as patients as a group could do, to make our experience (and ultimately then our outcome) with this disease better.

I found my gift is talking and writing. Other people have gifts in fundraising. Good for them, because while fundraising is the obvious way many people think of for making a difference, it isn’t my gift. And that’s okay, because we need people to put on incredible fundraisers and we need people like you to do… well, whatever it is you do.

So I started talking, and I didn’t shut up. Haven’t shut up, in fact. And the crazy thing is, people are listening. People at the PHA listen and when patients have ideas and wishes and hopes, they do everything they can to make them come true. Friends and family are listening. Because I’m talking, they better understand what PH is and some have stepped up to really do amazing things for our community. Even my state is listening, because I had a chance to go on Connecticut Public Radio and participate in an interview with Rev. White from PHA and Dr. Trow from Yale. 

You find your gift, you find your voice, and people sit up and pay attention.

What’s your gift? My sister is a hobby photographer, so she started Amharc Photography and donates a significant portion of her proceeds to PHA. My friend Sam is a nurse, and she donated her skill and know-how to help me write an article on talking to your kids about your disease. My phriend Kimberly has a gift of bringing people together. The facebook groups she’s started online have grown by leaps and bounds in a matter of months. My phriend Stu has the gift of networking. Want to know what’s happening in the PH Community? Who needs a helping hand or a round of applause? Ask Stu! Jack Stibbs has a gift for I don’t even know what exactly, but the man has raised over a million dollars for PH through his annual fundraiser, and that’s nothing short of amazing. Carl Hicks has the gift of compassion. Even after he lost his daughter Meghan last year, he continues to stand by us and fight.

I could go on and on naming people who knock me out on a daily basis with what they put in and accomplish for us. The people in our community are incredible, and if you’re a part of that, you have something incredible to offer too. What is it?

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?