Wednesday, November 28, 2012

Steve Van Wormer's path of pediatric PH...6 years later

The following guest blog was written by Steve Van Wormer on the anniversary of his son's diagnosis with PH. Thank yoiu Steve, Lucas and Marina for all you do and for being models for so many in our community...

My PH Past:

Today marks the six-year anniversary of my son Lucas’ Pulmonary Hypertension diagnosis.  On October 28, 2006 he was only four years old when he underwent an array of cardiac testing and my wife Marina and I first heard the words, “Pulmonary Hypertension.”  As any PH parent, patient or caregiver can attest to, it’s a day one never forgets and a diagnosis that changes everything.  Lucas did have about a year of declining health and energy, but in hindsight, we consider ourselves lucky and blessed that his diagnosis was made earlier than most in our community.  What I remember most about that day, after shedding some tears of course, was making the decision to not curl up in a ball but to become a champion for our only child.

 

My PHA Present:

In January through May of this year, thanks to receiving a Tom Lantos Innovation in Community Service Award, I created a series of five Public Service Videos for PHA, with the hope of building PH Awareness.  These videos seem to be resonating not only within our community, but in the media as well.  They have generated news stories on TV & in print and have become a fixture on YouTube and facebook and at PHA events.  They’ve even played on flat screen TVs inside port-o-potties at PHA’s Woodland Crawfish Festival fundraiser… true story!

 

One of those spots, which can be found here, is a call to action to support the Robyn Barst Pediatric Research Fund, voiced by none other than Lucas himself.  As a parent, I couldn’t be prouder of his contribution to PHA.  As a member of PHA’s Board of Trustees, I couldn’t be more thankful to former board chair, Carl Hicks, who was instrumental in taking the Barst fund over its $1,000,000 goal at a recent fundraiser, triggering PHA’s first ever pediatric specific research initiative.   

 

Earlier this month, to coincide with PH Awareness Month, my creative partners and I were asked to translate some of these PSA spots into Chinese and Spanish to reach patients and medical professionals across the globe in China, Spain, Mexico and South America.  I’m so thankful that, six years after Lucas’ diagnosis, PH Awareness continues to spread across the world.

 

My PHA Future:

I’m very happy to announce another PH Project that launched a few days ago on Thanksgiving: a PHA Podcast, dedicated to raising PH Awareness.   “Empowered by Hope – The PHA Podcast” will bring dynamic stories and journeys from PH patients, caregivers and medical professionals in a series of impactful, insightful and, most importantly, hopeful conversations with members of the Pulmonary Hypertension Community.  Three episodes were released last week.  They are a series of conversations with our “Kitchen Table” Co-Founders Pat & Jerry Paton, Judy and Ed Simpson, and Dorothy Olson.  I’m sure you will enjoy listening and learning all about how our organization was formed.  A facebook page was also created (search: Empowered by Hope: The Pulmonary Hypertension Association Podcast).  I hope you can take a moment to “like” it and join in on the conversation.  I’m spending today’s six-year anniversary of Lucas’ PH diagnosis at UCLA with Lucas’ PH doctor (Dr. Juan Alejos), recording a new episode, with many more to follow.

 

In one of the podcasts, which you can subscribe to and download here, PHA Co-Founder, Judy Simpson told me what it means to be a PH Caregiver.  She said, “You do things you never thought you could do.”   Truer words have never been spoken. 

 

So many things have happened on our PHA journey over the past six years… so many things I never thought I could do. 

 

Did I ever think I would travel to Washington D.C. to visit Congressional and Senate offices to solicit support for our PH Healthcare Bill?  No.

 

Did I ever believe I would serve on a planning committee for an international Conference for 1500 patients, caregivers and medical professionals?  Certainly not.

 

Did I ever suppose I would create videos and podcasts that would be shown across the globe from Burbank to Barcelona to Beijing?   Never.

 

But I did.  And I do.  And I will continue.  In honor of my son, Lucas.  On behalf of pediatric patients like Iain, Katie Grace, Parker and Maddie, who need more research and treatment options sooner than later.  In memory of pediatric patients like Rayni, Taylor, Meaghan and Molly - who may have lost their PH battle, but will never be forgotten.

 

Monday, November 19, 2012

Awareness Month: Voices from the PH Community (#7)...

Last Tuesday, November 13, we had our annual Congressional Luncheon.   It is always held on Capitol Hill and this year was in the Dirsksen Senate Office Building.  I particularly liked that because Senator Dirksen, who was a Republican from Illinois, was one of those large personalities who defined the greatness of American politics for me as I was growing up.

One of my favorite quotes from Senate Minority Leader Dirksen - one that should be well remembered by politicians today - was...
I am a man of fixed and unbending principles, the first of which is to be flexible at all times.
We were pleased to have about 100 Congressional staffers and PHA members attend the event.  Carl Hicks emceed and introduced a number of speakers, including Senator Bob Casey of Pennsylvania (who has championed the Tom Lantos PH Research and Education Act in the Senate) and Dr. Gary Gibbons, the new Director of the National Heart Lung and Blood Institute.  Both spoke knowledgeably about our work and Dr. Gibbons remarked on PHA's long and productive partnership with his Institute.  Dr. John Berger, a pediatric PH specialist at Childrens National Medical Center in Washington, DC, discussed issues related to PH, most notably speaking to the complexity that the FDA has introduced into the field as they dealt with the request for a pediatric indication for sildenafil, an issue PHA's Scientific Leadership Council also recently addressed.

But most of all, we heard Diane Ramirez, who has advocated for a better life for all those living with PH  throughout her home state of North Carolina (and beyond), tell her own moving and powerful story of living with PH.  Thank you Diane and thank you Alex Filipse for filming Diane so that it can be shared below.



After Diane spoke, patients and family members from 12 states headed out to talk to our Senators and their staffs.  Here's a picture of part of the group of 20 who visited Maryland Senators Mikulski and Cardin.


This is number 6 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too!

Monday, November 12, 2012

Awareness Month: Voices from the PH Community (#6)...

At the beginning of Awareness Month, I attended the Vision of Hope Gala in Baltimore.  Prominent on the program was a video from Meera Salamah, speaking about her life with PH.

The first time I saw Meera was in 2010 when she appeared in the fashion show at Conference with her smile and her pump.  I guess she was about 14 then.  It was her smile I never forgot...watching her video now it is her wisdom I will always remember.

Many thanks to Meera for allowing PHA to share it with you.





This is number 6 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too! 

Wednesday, November 7, 2012

Awareness Month: Voices from the PH Community (#5)...


Here's another guest blog.  The McNiff family inspired PHA staffer Ellen Leoni to write...  

After Britt and Sean’s 4½ year old daughter, Mimi, was diagnosed with PH, they found support through a parents’ PH group on Facebook. Britt says, “Seeing what other people were creating for awareness was sometimes shocking but always validating and inspiring.”  

Not long after, Britt was empowered to fight back by raising awareness and funds for the Robyn Barst Pediatric PH Research and Mentoring Fund by running the Smuttynose Rockfest half marathon in Hampton, New Hampshire. Through their personal fundraising page, Facebook and email, and with passion and dedication, the McNiffs raised more than $12,600 in honor of Mimi and in support of pediatric PH research.

PHA’s strength comes from community members like the McNiff’s who are dedicated to fighting this disease and finding a cure for pulmonary hypertension. Watch this incredible video of the McNiff family as they all prepared for Britt to run the half marathon... 


This is number 5 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too

Awareness Month: Voices from the PH Community (#4)…


Here's a guest blog from PHA's webmaster, Diane Greenhalgh, written as we complete week one of Awareness Month...




We are just a week into Awareness Month and so much has happened, so many people are making a difference already!

We kicked off the month on Nov. 1 with PH Online Awareness Day. The PH community worldwide took part by sharing information about pulmonary hypertension, photos, videos, personal stories, blogging, emailing friends and publicizing their special events in November. 

There were a lot of posts that used our zebra theme and messaging from Sometimes it's PH: An Early Diagnosis Campaign. The community has really taken the zebra and run with it.  At the top of this blog, you can see the zebra themed awareness image above that was posted by the Latin American health awareness group Concientizaci√≥n De La Salud.

PH associations around the world also held events in conjunction with PH Online Awareness Day. In the United Kingdom they organized people to wear purple lips and in South Africa to share their letters to God.

PHers in the U.S. have so far garnered 60 proclamations declaring November as Pulmonary Hypertension Awareness Month from state and local governments across the country and the month has three weeks left! Michelle Holden in Florida secured 35 proclamations alone, and Jen Cueva from Texas used her proclamation in a letter to the editor in the Galveston Daily News. Read the letter to the editor

Others are doing so many other things, including tabling at local health centers, posting information at work, wearing purple and zebra stripes, and writing a paper in school.

This past weekend, volunteer organizers held seven events across the country in California, Maryland., Nebraska, New Mexico, New York and Texas. They raised awareness and funds for the cause through fun walks, 5Ks, a gala, a brunch and a six-minute marathon. The Texas group (Zebra PHriends!) was even on Good Morning Texas to promote their event and PH awareness. Watch the video below...

                                    



This is number 4 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too!

Friday, November 2, 2012

Awareness Month: Voices from the PH Community (#3)...

Just a few weeks ago, Carl Hicks spent 36 hours in the air for an extended weekend trip to Seoul, Korea.

The new Korean PH association had invited him to help infuse the same spirit of volunteerism that they had seen in PHA into their own new organization.

As an important part of his presentation, Carl had asked Colleen Brunetti, co-founder of PHA's Generation Hope group, to speak on film on what her volunteer involvement means to her.

It is a wonderful statement that was well received in Korea and has value for anyone anywhere interested in fighting back against the disease that has intruded into their lives.  So before PHA places Colleen's video on our website, here it is as an awareness month preview...



This is number 3 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too.