Monday, November 21, 2011

The Lantos Grants: now it's YOUR turn...

Our advances at PHA have always come as we have learned from each other.

PHA's annual Tom Lantos Innovation in Community Service Awards are a great example of that truth.

Up to ten creative ideas will be funded in 2012 with funding of up to $5,000 for each, thanks to an annual grant from Gilead.

If you've got a good idea that can help the PH community, read the guidelines and YOU can apply NOW!  The deadline is January 6.

  •  In 2011, Colleen Brunetti's idea was to create a YouTube video discussing the value of PH e-mail and discussion groups.  With other patients, Melanie Kozak, Raye Bohn, Misty Lewis and Carol Morrison  as the on-screen talent and PH dad Steve Van Wormer as the narrator, Colleen's vision was funded through a Lantos grant and became reality.  It's now available online both as a value for the PH community and a best practice for others to build on.  You (and the rest of the world) can watch it now!
  • Donna Lain and her daughter, Andrea, had an idea to to provide support for children diagnosed with pulmonary hypertension...Kari Bags named in honor of Donna's daughter, Kari Beth (9/9/1982 – 5/27/2003). The bags provide educational material about pulmonary hypertension and are filled with age appropriate toys, games, and stress reliever items. Kari Bags allow kids to have stuff to play with when they are required to be in the hospital for procedures and tests or admitted for infections or line problems. The bags are produced for three age groups and distributed through PH Centers and pediatric PH support groups.  So far, the new program has distributed over 150 Kari bags and were featured at this year's PHPN Symposium.
  • In 2010, the first year of the Lantos Grant program, Donna Caterini received funding to fulfill her idea of building PH awareness through a clever "Huff & Puff" poster, featuring the Big Bad Wolf.  The 11x17 posters have been a big hit...distributed through support groups and available for free to any in our community who want to place them in local libraries or other public places.
And the Lantos grant program isn't restricted to the U.S.  It's available to the PH community throughout the world.  Read the story of the Spanish PH group, ANHP.  That's a picture of their meeting to educate psychologists about the needs of PH patients at the top of this page.

Now it's your turn!  If you have an idea you'd like to bring to reality for the good of the community, the Lantos grants are for you.  The application is not complex and the benfits for all who live with PH are great. 

We look forward to receiving your proposal.

Thursday, November 10, 2011

An awareness month journey...

As I write this, we are only 10 days into Awareness Month...and it is already shaping up to be an extraordinary journey.

I began the month a bit early (October 28) with a 3 day trip to Frankfurt, Germany where I was honored to address the German PH Association - PHeV - on the occasion of their fifteenth anniversary.  Their founder, Bruno Kopp, is a PH patient in a family with 15 PH patients.  He is a man who said, "enough", and in 1996 decided to do something about this disease.  Over 300 patients and family members attended the conference and, besides Bruno, it was great to see so many old friends, including Gunter Timm (who acted as my translator) and his son, Drs. Olschewski, GrĂ¼nig  and Ghofrani and PHA Europe president Gerry Fischer.  The event was a strong reminder of how vibrant the global PH community has become.

The day after getting back, Dr. Rich Channick and I journeyed to New Jersey where we met with Novartis medical leadership to help them understand PHA programs and activities as they anticipate entering this market.

When I got back to the office I saw an amazing growth in the ways our community is using social networking to build awareness of PH.  Weekly Facebook prompts began going out from our office with the first being, Pulmonary hypertension feels like...  Emma Bonanomi summarized this week's 83 responses as... 

ranging from the serious (“running up and down stairs for at least 10 minutes on an empty stomach with no sleep”), to the lighthearted (“the best dang excuse to play video games I've ever had :D”) to the inspirational (“my number one reason to fight harder”).
PHA's Facebook friending (and reach) has been growing at an amazing pace this month - at 4,981 this afternoon - on pace to be over 5,000 in the next day or two.

On another communication front, our web staff - Diane Greenhalgh and Kathy Frix - added a great new tool to PHA's website.  In the upper right hand corner of every page on is a select language box, allowing translation into any of 52 languages.

City, County and State PH Awareness Month proclamations have been flowing in rapidly (Elisabeth Williams reports 33 and growing) and South Carolina PHA member Doug Taylor even got his Member of Congress to discuss PH Awareness Month and PHA in the Congressional Record.

The American Thoracic Society has partnered with PHA for a PH Week (it began November 6) within that society of pulmonologists and launched a website to educate ATS membership.  As part of this effort, PHA is hosting a webinar on November 10 with 5 leading physicians presenting on Improving Patient Outcomes and Early Diagnosis.  Several days after the live event (over 170 registered!), it can be viewed on both PHA Classroom and PHA Online University.

Last Sunday, Jess McKearin and I were in Palo Alto, California for the Stanford Race Against PH.  It was their 11th Annual begun by the Ewing family and now grown to an event that includes over 1,500 participants.  Board members Harry Rozakis and Rita Orth were there to join with Drs. Zamanian, Krasnow and Feinstein and Kristi Kerivan and their great team from the Wall Center at Stanford. This year PHA launched our new Six Minute Marathon as part of the Race to provide more understanding of what PH patients go through with this disease.  It was a great success and we'll be rolling out the Six Minute Marathon at other events in 2012.

While Jess and I were in Palo Alto, Adrienne Dern, our Senior VP, was speaking at the patient program at the Cleveland Clinic PH Summit and our Medical Services staff. Rebecca Kurikeshu and Caitlin Flewellen were staffing a well-trafficked exhibit at the American College of Rheumatology meeting in Chicago.  Debbie Castro was on the road, too, for events in Phoenix and Fort Wayne.

The day after Palo Alto, Bob Gray and I Amtraked to New York where we had a wonderful luncheon to celebrate a major gift to the Robyn Barst Pediatric Research Fund.  We'll be telling more of that story very soon.  Tomorrow it's on to Memphis for an American Thoracic Society Patient Advisory Roundtable board meeting.

As I'm typing this, Megan Mallory brought in a hot off the presses copy of our 2011 annual report and that will be going out in the mail to members in the next few days.  I think it gives a great outline of all that our community is doing to change the history of this disease.

We've still got a long way to go on our the Awareness Month 2011 journey. Check PHA's News Feed to see what's new with Awareness Month...and PHA's Awareness Month pages to see how you can help

Friday, November 4, 2011

Let me breathe...

There is so much happening during PH Awareness Month.

...And it's happening all around the world.  Today, I received a Facebook friend request from a young man in South Korea.  When I took a look at his page, I was amazed to see a promotion of PHA's upcoming (Nov. 10) webinar - Improving Patient Outcomes and Early Diagnosis: An Examination of the REVEAL Registry - right at the top!  The presenters will include:
  • C. Gregory Elliot, MD, Intermountain Health Center (Facilitator)
  • Vallerie McLaughlin, MD, University of Michigan
  • Lynn Brown, MD, PhD, Intermountain Health Center
  • Richard Channick, MD, Massachusetts General Hospital
  • David Badesch, MD, University of Colorado at Denver
Also today, Megan Mallory, who leads our Publications Department, got a lovely note from the Co-Leader of the Toronto Chapter of PHA Canada.  Ruth Dolan, who had attended a webinar on Expression of Well Being led by Megan and Janet Stone, wrote:

I thoroughly enjoyed this webinar and do look forward to attending more in the future. I mentioned during that session that I would be participating in an experience at our local library called "Get a Life- Human book Festival" and I said I would get back to you about the experience so you might choose to share it with other PH Friends.
It was an amazing experience and for me an opportunity to share my PH Journey with my youngest daughter Emily, with those who came to the library and "took me off the shelf" to "read" me.

My "Book" was called "Let Me Breathe". just like the PH Song written by my brother, J. Paul Adams for his niece and dedicated to her and all PH patients [see below]

There were about 7 human books at our local library branch and there were four libraries through out Simcoe county participating, one for the four Saturday's in October. For me it was yet another opportunity to make people aware of PH in a very personal way.

About 30 min. was allowed for each reader but we always seemed to spend at least 40 -45 min. together; as my reading sessions had a break between each one I was able to spend the extra time with the readers. My first reader was an author and a very caring listener. She has since asked me if I would like to write my story to be included in a book of other women's stories....very tempting.

I took our PH Canada and Toronto PH brochures along to give to my "readers' so they had something to take away and do further research about PH. The local media was also at the even and interviewed some of the "Books".

Although it was a "small" audience with which to share our PH Journey it was one that I would gladly do again because of the personal nature of the sharing and I think and the impact it had on the "reader". I feel that just as when I read a great book I love to share it with friends, I also feel that my readers will hopefully share the experience of reading "Let Me Breathe" with their friends and thus making even more people aware of Pulmonary Hypertension.

On another note:

Our Toronto PH Fundraiser and awareness campaign is taking place this Saturday. We have the Let Me Breathe Vegas Night and are also using that occasion to gather real and virtual hand prints that will go on a large banner or several I hope , to our capital in Ottawa on the 29th of November. Feel free to add your hand print to our efforts by using the link below from our Canadian Website.

All the best to you and to all our American PH Friends. I am looking forward to seeing you again in Orlando in 2012

Here is Let Me Breathe, written by J Paul Adams, Ruth's brother...

It can also be found on the PHA Toronto website.

Wednesday, November 2, 2011

First Media in Awareness Month

I just watched Patty Kaiser's interview on St. Louis TV station KSDK.  Meet Me St Louis host Julie Tristan filmed and edited Patty, using live and archived footage that ranged from the Blue Lips campaign to  2011 PHA Dinner and Wine Tasting Fundraiser coming up on Saturday November 12th. It was a great start to Awareness Month. Watch the Video

After her interview, Patty wrote:
Patty is not alone in getting awareness month going...
Even through I am terrified of sitting in front of a camera and being interviewed, I am so passionate about PH awareness, and getting the message, out that I am willing to "put myself out there" so others may not have to go as long as I did before finally being diagnosed. 
Alex Filipse hit a proclamation trifecta with proclamations from Takoma Park (the city where she lives), Montgomery County (the county where she lives) and Maryland itself (the state where she lives...and proclamations are starting to roll in from around the country.

Gerri Brown suggested...

Here's an idea that we may want to try on PH Awareness day or Month - change your last name to one of your meds.
Now, she's Gerry Viagra-Brown on Facebook and we're seeing the idea move like wildfire through the community, raising questions and curiosity that are giving a great opportunity to talk about PH.
This year's Awareness Month theme - The Power of One - is leading to benefits for many!