Tuesday, July 23, 2013

Ripples in the stream...

It's nice when recognition for PHA comes from others who recognize the work this organization does.

It's very special when that recognition comes from our own community.

Recently, I got the following e-mail message with the magic words, "your supporters have spoken"...

This message is brought to you by GreatNonprofits.org

Your supporters have spoken, and you've earned a spot on the 2013 Top Rated List! ""Pulmonary Hypertension Association"" is one of the first nonprofits to be honored this year and you are now listed as a winner on our leaderboard here. You'll be featured in our 2013 Holiday Giving Guide and on our 2013 Top-Rated List, distributed to media and corporate foundations.

All of us at PHA appreciated that people had taken - and are taking! - the time to tell Great NonProfits about what PHA has meant to them.  

But that wasn't all...  On the same day, Jaclyne Franciscone of LaRue PR wrote to our New York
Chapter executive director, Gina Parziale, to let her know that PHA has been included in the Charity Finds section of People StyleWatch. 

That's a big awareness-builder...with a great fundraising bonus.  People StyleWatch features a shiny gold “mirror” tote bag whose manufacturer, Galian, will donate 20% of proceeds to PHA on bags ordered at Galian.com by Aug. 16.  And, get a discount on the bag, too, by typing in PEOPLESTYLE20 at online checkout. 

So, this blog is not really about the honors, it's about the people who make them, and the awareness of PH they bring, happen.  People like those who initiated the Great NonProfit listing with their stories.  And, people like Jaclyne Franciscone who - when I wrote to say thank you - responded,
Absolutely! I’m thrilled it made it into the issue. Last February, after a three year struggle, I lost my mother to PH. I, along with my sister & dad, would do anything in our reach to help raise awareness for Pulmonary Hypertension. So happy I was able to make a small impact!     
Ripples in the stream.  Each of us makes a choice to act.  Each action makes a difference. 


Wednesday, July 10, 2013

The Bill is in...now it's up to you

Did you know that there is a bill in Congress dedicated to making life better for people with PH? It’s called the Pulmonary Hypertension Research and Diagnosis Act and was introduced by our friends Reps. Kevin Brady (R-TX) and Lois Capps (D-CA). Sen. Bob Casey (D-PA) is working on a Senate version to be introduced this month.

Some of you may be familiar with PH legislation from previous years, but our new bill is completely different. What's important about it in the current legislative environment is that it’s designed to make a big impact without asking the government to spend any new money.

The bill may be new, but its success still depends on you. Take a look at the guest post below from PHA’s Grassroots Campaigns Manager, Elisabeth Williams, to learn more.

PHers Educate Congress on New PH Legislation
Taking a stand together to advocate to Congress about PH is standing together to save a life.
We need more early diagnosis, more education in the medical field, more affordable treatments.”
                                                                                        --Nicole Cooper, PH patient

This spring, Reps. Kevin Brady (R-TX) and Lois Capps (D-CA) introduced a new bill called the PulmonaryHypertension Research and Diagnosis Act of 2013 (H.R. 2073) in the House of Representatives (H.R. 2073). Since then PHers have been emailing, calling and scheduling visits with their Members of Congress to educate them about how this bill will improve life for those living with pulmonary hypertension.

This budget neutral bill calls for the creation of a committee within the federal government focused on giving people living with PH longer, better lives. The group, including representatives from NIH, the Centers for Disease Control and the Department of Health and Human Services would work together to:
  • Advance the full spectrum of PH research from basic science to clinical trials
  • Increase early and accurate diagnosis of PH
  • Educate medical professionals and the public
So far, these efforts have resulted in several Members of Congress co-sponsoring the bill, including:

Rep. Timothy Bishop (D-NY)

Rep. Jim Costa (D-CA)

Rep. Peter King (R-NY)

Rep. Richard Neal (D-MA)

Del. Eleanor Holmes Norton (D-DC)

Rep. Devin Nunes (R-CA)

Rep. Peter Roskam (R-IL)

Stand Together and Advocate!

The success of this bill depends on you! Join other PHers who are standing together to push this bill through Congress. Here’s how:

1)      Contact Your Members of Congress! Educate your own Member of Congress and ask him or her to co-sponsor the newly introduced Pulmonary Hypertension Research and Diagnosis Act of 2013. It’s easy! Simply send an email using PHA’s new online advocacy tool. All you have to do is add your name and zip code and click on Take Action.  That will show you your Member of Congress. Then just take a few minutes to personalize the sample letter with your PH experience. With that brief effort you'll be maki9ng a big difference in helpong your Member of Congress understand the need for more treatments and early diagnosis.  (Oh, and if your Member of Congress is one of those listed above...change the sample letter to just say Thank You for supporting the Bill!)

2)      Sign up for the 435 Campaign! Stand with other PHers who are working to ensure that all 435 Members of Congress support legislation critical to the PH community. We’ll give you the tools to help you easily share your story and make PH more visible in Congress. Email Elisabeth at Advocacy@PHAssociation.org to join the 435 Campaign.

3)      Stay in the know! Stay up-to-date on late-breaking Congressional news and opportunities to advocate for PH legislation. Sign up for PHA’s monthly Advocacy in Action Alert emails