Monday, April 15, 2013

Cherry red to Gaelic green…

Megan Mallory and "cherry red" Ellie Ganelin
As PHA has worked hard to do more with less this year, we’ve seen a lot of people step up to fill the breech…and for that we are extraordinarily grateful.

I often write about people who contribute their time, talent and treasure to keep PHA strong.  Usually, it’s about patients and their families who respond to the value they see in PHA, sometimes it’s about industry fulfilling their role as corporate citizens, often it’s about event organizers building awareness and support from their own communities.

Today, I am writing about a different group – one we don’t usually think about as donors – your PHA staff.

We have always had a staff that understands the value of what we do.  Most contribute as donors but, recently, the way they have been contributing has evolved to something different.  It has become collective and spirited in a new way…a way that has been inspiring for me to see.

The change began with Ellie Ganelin.  Ellie is one of the creatives in our Publications Department.  What she came up with certainly reflects that.  She raffled her hair color! 

Ellie sold lots of tickets to raise funds for our work and, while a lot of us were rooting for periwinkle, Diane Greenhalgh won with her choice of cherry red…a color with which Ellie continues to light up the PHA office.

Danielle Clifford pulling raffle tickets at McGinty's
At around the same time that Ellie was completing her raffle, Danielle Clifford announced a Restaurant Night Out at McGinty’s Public House in Silver Spring.  McGinty’s donated a portion of their income for that night and a raffle added considerably to the proceeds.  With most staff and many friends participating, enough was raised to fund a patient scholarship for the 2014 Conference.  A second event is being planned for November.

Other staff are doing fundraising pages – Doreen Lucadamo in memory of her mother, Debbie Castro in honor of her sister.

I’ve always known that our staff understands the importance of our work.  It’s inspiring to see that understanding manifest in a new – and fun – way.  I remain grateful for the people I am privileged to work with.

Friday, April 12, 2013

Yes we can...yes we did!

In 2012, the FDA began an initiative to involve patients in the drug development process.  They identified 39 potential diseases of which PAH was one.  Through their public process, the candidate diseases grew to 90.  For each of the selected 20 disease areas during the five year course of this effort, the FDA will conduct a public meeting to discusss the disease and its impact on patients' daily lives, the types of treatment benefit that matter most to patients, and patients' perpectives on the adequacy of available therapies. Besides patients, the meetings will include participation of FDA review divisions.

Today, we got the great news that PAH is one of the 20 selected diseases for participation!

After our Washington rep, Dane Christiansen notified us, here's what PHA's Advocacy and Awareness Director, Katie Kroner, wrote in her announcement...

In October, PH patient and PHA Board Member, Colleen Brunetti, represented the PH community before the Food and Drug Administration (FDA). In her testimony, Colleen argued for the inclusion of PAH in FDA’s new patient focused drug development initiative.

The goal of this initiative is to engage those living with a wide variety of diseases in giving input to the FDA about how the drug and device approval processes can be adapted to better meet patients’ needs. For example, FDA will seek input on the way they assess risk versus benefit during the approval process for new drugs and devices.

FDA selected 20 disease communities to work with over the next three years and the PAH community is one of them! Several diseases associated with PAH are also among the 20 selected, including sickle cell, HIV and idiopathic pulmonary fibrosis.

PHA plans to use this opportunity to build a long-term, collaborative relationship with FDA that will benefit the entire PH community well beyond the term of the initial project. We look forward to updating you as we learn more.

So, PHA was successful and, as always, that success emerged from the "power of one" - an individual willing to step forward and unite with other individuals in the fight against PH.

Like Colleen, you can make a difference, too.  PHA's 435 Campaign matches patients and families with your own Member of Congress.  Over time - and with PHA's help - you can develop a relationship with your Congressman or Congresswoman.  The late Speaker of the House, Tip O'Neill often said "all politics is personal".  He was so right...and it's also true that all politics is local.  Your House Member or Senators want to hear from you and they will respond.  We can only win the battles we must continue to fight if we work together.  We very much need you.   If you would like to find out more about how you can help with your Member of Congress through the 435 Campaign (or make a connection with your local media through PHA's PHAware Campaign), contact Elisabeth Williams at

I'll close this blog with Colleen's testimony. She made a difference...and so can you.  Drop Elizabeth an email today!
Colleen's Testimony
Hello, thank you for having me here today. Before I begin I would like to extend my sincerest thanks to the FDA for undertaking this tremendously important Patient-focused Drug Development initiative. My name is Colleen Brunetti and I am a pulmonary hypertension patient, looking to my coming 5-year anniversary of diagnosis.

I was diagnosed at the age of 28. I went from a young mom and wife, quickly climbing the ladder in a successful career, to suddenly facing down my own mortality with a disease that I was originally led to believe might kill me in less than five years. I went from planning a life to worrying that I might not see my baby boy reach Kindergarten.

Well, that baby boy entered first grade this fall, and I was there. And I’ve learned a lot.

When you get a diagnosis of pulmonary hypertension, or PH for short, your life changes. For some patients, it means a sudden stop of activities once enjoyed, because you quickly find you no longer have the breath or endurance to sustain them. For other patients, it is finally the answer they were seeking, after too long of searching for an explanation to their symptoms.

Because PH is often misdiagnosed, many who finally get a diagnosis are already in advanced stages, with quality of life severely impacted. Medications can help, but often with severe side effects. The only cure remains a lung and sometimes also heart transplant.

Medication can mitigate symptoms of PH and slow disease progress, and that could be dramatic, or minor, or temporary, depending on the patient.

I have responded well to therapy, although this was not always the case. But I am always acutely aware that this improvement could be temporary. I’m doing great. But PH is still PH. It’s still progressive and the ultimate treatments are still extreme

 The Pulmonary Hypertension Association has blazed a trail of research, education and support. Patients, doctors, caregivers, allied health professionals, volunteers… all coming together to put hope in action, and to spur us forward until we do indeed reach a cure.

Please select “pulmonary arterial hypertension” and “organ transplantation” as disease areas for the initial 5-year pilot program of the Patient-focused Drug Development Initiative. PHA and the PH community are dedicated to working with FDA in a meaningful and constructive way to ensure this pilot program is a success. It is not only our goal to see that the patient experience better informs regulatory decision-making for PH, but that this effort grows into a sustained campaign of close collaboration between FDA and all patient communities, which continuously improves the system for reviewing and approving innovative therapies.     

Thank you.

Tuesday, April 2, 2013

May 5: World PH Day is coming...and is here!

In 2011, Juan Fuertes and Irene Delgado of AsociaciĆ³n Nacional de HipertensiĆ³n Pulmonar (ANHP)the Spanish PH association had a big idea.  It was also a big risk. 

Juan and Irene thought that the creation of a World PH Day would help expand awareness of the disease.  However, like all new ideas, it started with very little support.  They worked hard to engage PH associations around the world and to build interest from funders.  On May 5, 2012, they hosted a PH Symposium in Madrid that included about a dozen PH association leaders from Europe, Asia, Latin America, Africa and North America.

Most importantly, they started something that should, could and would grow.

This year, what Irene and Juan began is much easier…everyone is jumping in to help.  Here at PHA,
we have accepted the responsibility of establishing the World PH Day website.  Since it went live two weeks ago, World PH Day events and participation from 43 national and international PH associations has been posted…with more coming.  PHA Europe has been working on making a sports event model they have created available to other associations throughout Europe and beyond.  Other groups are planning their own unique activities.

Interest in the website is astonishing.  Custom translations have already been completed for Chinese and Portuguese…and Spanish may well be available by the time you read this.  In addition, Google Translator provides access to the site in 65 languages.

An exciting feature of the website that we hope will grow – and that YOU can participate in – is the Worldwide Photo Mosaic.  Patients, families and friends from around the world are beginning to upload pictures with their own World PH Day message.  There’s even a World PH Day logo that can be printed out and included with the message.  One of my favorites was posted by one of PHA’s founders, Pat Paton. She wrote:

              “I saw 29 doctors about my PH symptoms before I was correctly diagnosed.  That was 26 years ago!”

Another World PH activity that PHA has just launched on our own website is Flames of Hope .  Flames of Hope allows our community to honor or remember a patient, caregiver medical professional or other person who has made a difference in their lives while providing support for current programs.

We hope you will join with us as we establish World PH Day as an important way to expand knowledge and awareness of PH throughout the world.  Awareness is a critical first step in improving the lives of all those who live with PH.