National PAH Blog Day

November is Pulmonary Hypertension Awareness Month. Hopefully with all the work done by so many PH patients, family and friends, many more will become aware and knowledgable of this disease. Saving one life or having just one person diagnosed and treated in a timely fashion will make all our efforts worth while.

The Piedmont Pulmonary Hypertension Support Group has been extremely busy since the PH Conference in June 2008. Here is a list of what I can remember in no special order. These things could not have happened without the total dedication and hard work of Diane, our support group's Advocacy Chair.

• Visited Torre Jessup, District Deputy for Representative Mel Watts
• Visited Representative Howard Cobble
  
• Visited Representative Virginia Foxx
• Visited Rose Auman, District Deputy for David Price
• Visited Representative Brad Miller
• Visited Senator Elizabeth Dole who agreed to introduce the Tom Lantos Research and Education Act into the Senate. Those of us with PH were saddened when Senator Dole did not get re-elected. We will continue this mission with Senator-Elect Kay Hagan.
• Gave an advocacy presentation to a neighboring support group
• Attended a PAH presentation/dinner in Charlotte, NC
• Held the third NC Cure PH Golf Tournament raising approximately $12,500 for PH research
• Distributed PH information during Belk's Charity Day November 15, 2008
• Cindy attended Lewisville, NC Town Council Meeting November 13, 2008. Gave a three minute PH presentation to the council. Proclamation granted for November being PH Awareness Month in Lewisville. (Just a note--our current governor does not do proclamations thus the request on the local level)
  
• Arranged and set up PH information table in the lobby of Wake Forest University Baptist Medical Center during the week of November 17-21, 2008
• Diane has Interview November 18, 2008 for featured article in local newspaper--That is today!!
  
• Interview scheduled with Fox 8 News November 19, 2008
• Plan to attend PH lecture presented by Dr F. Torres from SW University of Texas November 19, 2008 (this is immediately following the TV interview at the Medical Center--perfect timing!)
  
• Will be attending The Pulmonary Hypertension Congressional Luncheon Thursday November 20, 2008.
• Plan to attend the PH Christmas lunch presentation in Ranole, VA December 2008. Dr Victor Tapson from Duke University is the speaker

We plan to take two weeks off during the holidays but will come out swinging January 2009. As I write this list it amazes me just what our little support group has accomplished since Conference. This did not include the emails and calls to representatives regarding other legislative issues.

If we can do it so can you. Having Diane as the Advocacy Chair made all this possible. She kept up with who she spoke with, when they could meet, calling members, sending out thank you notes plus a lot more. There is so much work that still needs to be done. Share the work load. The support group leader can not possibly do everything--we also have PH and get tired. Just knowing we are helping is a true joy but we have fun, laugh hystirically, and shed tears of joy all at the same time. November may be the official Awareness Month but those of us with PH need to work on getting the word out all year long. Offer your services to your Support Group Leader. Maybe you have a special talent the leader is not aware of. Maybe you are a bit shy--just speak up. Don't wait to be asked. We all get very tired and do rest when it is needed. It makes the work a bit easier if we all pitch in.

Cindy
Piedmont PH Support Group Leader
North Carolina

Questions: cpickles50@gmail.com