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Thursday, January 19, 2012

Share your PH Video Story!


Please enjoy the latest Generation Hope in Action (GHA) video from Sean Wyman, as he discusses Tips for College with a Chronic Disease.  GHA is a subgroup of Generation Hope that strives to raise awareness, advocate for the cause and increase education for young adults living with PH. If you are interested in social networking, civic engagement or letter writing, we would like to hear from you.  Currently, we are planning several video messages to share with the Generation Hope community and their social networks.

Are you asking yourself, “What can I talk about?”

  • Tom Lantos Pulmonary Hypertension Research and Education Act of 2011
  • Dating with PH
  • Adoption and PH
  • College life and PH
  • Working and PH
  • Managing insurance and PH


This is a fun and easy way to educate the general public about living with PH as a young adult. If this sounds interesting to you, I would like to invite you to share your story!  PHA is happy to loan you a flip camera to make your video message.  For more information, on how to get started, please contact Chanda Causer at PHA.

Thursday, January 5, 2012

A New Year, Get Active!

It’s the start of another year, and most people are working on the traditional New Year’s Resolutions: eat healthier, go back to college, change career, lose weight, work out more … you know, the usual resolutions! But those of us with pulmonary hypertension don’t always have the same priorities as others. One of our top priorities is to remain active, even though, the simplest task can be difficult. But there is a way to get active this year that’s a little different from the norm. You can start your new year by becoming involved in the community that surrounds you.

There are many different ways to get active in the community. Why not start with your local PH support group? You can co-lead a support group, help with getting sponsorships for meetings, make telephone calls to other members or local PH doctors, help with topic ideas, get speakers for your support, help with a PH awareness event or fundraiser, and much more. And if there isn’t a local support then create your own support group. PHA can help you get started on creating a support group, spreading the word to other PH patients in your area, and help you maintain your support group. For more details visit PHA.

I started my support group in November, 2008 because it was over two hours to a support group, and I had a chance to give back to the PH community and stay hopeful. PHA helped me to get started with topic ideas, leaders training webinars and information to maintain my group. Through my support group, we have had PH awareness events from participating in a parade to setting up informational tables. It has been a wonderful experience that keeps growing and growing.

If you want to try something different outside the PH realm,there are always not-for-profit agencies. Most non-profit agencies survive on the help of their community volunteers. Generation Hopers can make a difference in the lives of the people in their community or to a special cause. You can work with the homeless population in the soup kitchens serving or cooking meals or volunteer in your local hospital and nursing homes. Sometimes sitting with other patients in the hospital or reading to the elderly for a few hours a week can be really fulfilling. You can even volunteer at your local library, domestic violence shelter, youth shelters, and so many other places. If you need help, contact your local United Way agency for more volunteer sites.

I recently joined a board of a non-profit agency’s new youth program in the local high school, and I have impact on the curriculum development, community events, advertising of event, fundraising ideas and much more. I’m so excited to get more involved in this great new program this year.

Where I dedicate most of my time and energy is at my church. I do this because it gives me the most spiritual and emotional fulfillment, and gives my life purpose and meaning. I joined my church’s Website Ministry and Youth Ministry. I love the Website Ministry because I do most of the work from my home computer and I use the least amount of energy. I’m able to serve God by sharing information with others without ever leaving my home especially on not so good days. But I wanted to do more and I wanted to serve God deeper, so I joined the Youth Ministry. Working with the Youth Ministry allows me to minister to the youth of my church in different ways. I can be a resource to the local youth and help with coordinating youth program, events and activities. I find it challenging, but I love to learn more of how I can help the youth today and serve the Lord.

Life is more than your PH diagnosis, so don’t let your illness stop you from anything. Get active this New Year! Look at what you would like to do and your strengths, and then match it to what surrounds you in your community. You can make a difference. Getting involved and volunteering in your community keeps you active, gives your life purpose and meaning, and empowers you with hope.