Taylor's Wish on ABC7

On Saturday June 2, the Third Taylor's Wish Race 2 Cure PH will take place in Tay's memory in Anaheim, California.  The event is organized by Taylor Caffrey's family and friends in her memory, raising funds for PH research and parient support programs.

The Caffrey family also does incredible work in building awareness of PH (as you can tell from the donated billboards that started popping up maround Los Angeles a few weeks ago). 

Recently, Steve and Lucas Van Wormer have been partnering with Tay's mom, Shari Caffrey in media efforts and this ABC7 news report is a spectacular result.



One of the exciting things about this news report, which also included Dr. Juan Alejos, is that ABC7 included a public service announcement (PSA) video that Steve and Lucas recently made using a Lantos grant from  PHA.  The station easily pulled it from YouTube.

We'll soon be adding Steve's video PSA's to our media page which already has his audio PSAs and to our media guide page.  As soon as we do, I'll be blogging about a story that Dr. Mike McGoon told me last week.  He used a free hour to get his local TV station to agree to air our new awareness PSAs.

Good luck to all the great folks who organize Taylor's Wish.  I know it will be a great day!

Research… a story, a call to action

This blog is about a shift that is dangerous – and unnecessary – for our country.  It offers a story and a call to action from the American Thoracic Society.

Since I was a boy – and that was a long, long time ago – the greatness of this nation’s National Institutes of Health (NIH) was a given fact.  Over many decades, much of the medical research funding that led to increases in knowledge and advancement came out of NIH.  Founded in 1887,  they built a system that worked.

It is a system that is now being given to other nations.

On April 26, as a member of the American Thoracic Society’s Research Advocacy Committee (RAC), I participated in visits to the offices of ten Members of Congress.

Here’s the good news.  As we visited Senate and House offices representing Maryland, North Carolina and Louisiana, virtually all said that they had received calls that day about PHA’s Bill, the Tom Lantos Research and Education Act.  (April 26 was also PHA’s National Call-in to Congress Day…our members were effective, as always.)

Now the bad news.

A key talking point for our visits was asking Congress to support NIH funding.

As we made our visits, a researcher who I spent the day with put it best.

She pointed out to Congressional staff that NIH is the world’s leader in groundbreaking biomedical research for the prevention, treatment and cure of diseases. Yet, due to eroded funding, NIH is able to fund about 10% of highly meritorious scientific research.  That number used to be over 30%.

She went on to explain what that means in real terms…

“Young U.S. doctors are no longer coming into the field.  When 10% of grants are funded and the competition is among the brightest minds in the world, even if a researcher gets their first five year grant, it’s not likely they will be able to get a second grant to allow them to stay in the field.  Young researchers understand this.  After I got my current grant and advertised to staff my project, all the applicants were from China and India, not one was from the U.S.  They will take knowledge from here and go home and the U.S. will be poorer for it.”

Listening to her, I was reminded of an experience I had several years ago, flying back from Chinese and Taiwanese PH association meetings.  About an hour into the flight, I started talking to the passenger next to me.  When he heard that I was from Maryland, he said, “I used to live there, in Bethesda.  I used to work at NIH”.  When I asked him what brought him back to Taiwan, he said, “Well, I’m a researcher in oncology.  The research money has dried up in the U.S.  Research money is flowing in Asia”.  That was in 2007.  The situation is a lot worse today.

Well, that’s the story…here’s the American Thoracic Society’s call to action…

ATS’s Research Advisory Committee recently wrote a paper titled, The Case for Increased Funding for Research in Pulmonary and Critical Care. 

The Abstract appears onthe ATS website , prior to print publication, opening with these words:

“The current economic and political climate places future funding of the NIH and other federal biomedical research programs in jeopardy. This Perspective seeks to arm the diverse membership of the ATS with the information necessary to understand and articulate the value of biomedical research in their respective communities.”

ATS has asked PHA and other organizations to help circulate the paper.  So that you can have full access to it, we have placed a copy on the PHA website. I encourage you to read, , The Case for Increased Funding for Research in Pulmonaryand Critical Care. 

It is compelling.  It is important.  It is a call to action we need to heed before it is too late.

An appreciated award from NORD...

Last night, PHA was pleased to receive the National Organization for Rare Disorders’ Abbey S. Meyers Leadership Award for 2012.

Here is how NORD presented the reason for the award to the 500 rare disease organization leaders, Members of Congress and industry supporters who attended their Partners in Progress dinner at Union Station in Washington, DC (click on the text to enlarge and read)…

World PH Day…a first among many

As a community grows, it develops traditions and opportunities.

The First World PH Day – celebrated on May 5, 2012 – offered both of those.  As patient and medical leaders from five continents gathered in Madrid, Spain for the Scientific Session and Celebration, I couldn’t help but think of how far we’ve come in so few years.

The first patient with PH was diagnosed just over 120 years ago, in 1891, by Dr. Ernst von Romberg, a German physician and clinical scientist. 

Sixty years later – in 1951 – after identifying just over 30 cases in the U.S., Dr. David Dresdale gave the disease its name. 

Ninety years later – in 1981 – the National Institutes of Health began a five year registry which enrolled 187 patients across the U.S., providing the first clear picture of the disease.

In January of 1991, 100 years after Dr. Romberg made the first identification of a PH case and forty years after Dr. Dresdale named it, four women sat around a kitchen table in Florida. Three were patients, one was a caregiver and two were also medical professionals (nurses).  Their coming together set in motion the beginning of a PH community and acceleration for change.  Their action led to the first PH association in the world.  Today, there are 58 such national associations throughout the globe.

Five years after PHA was founded, the first disease-specific treatment for PH was approved by the FDA.  Today, there are nine treatments – as many or more than all but two of the 7,000 rare diseases identified in the U.S.  PH association networks are flourishing in Europe  and Latin America.  Asia and North America are active and the South African PH association is a beacon in Africa.

It was great to celebrate with Juan Fuertes and Irene Delgado (who conceived of, organized, fundraised for and inspired the First World PH Day for which we again thank the Spanish PH association, ANHP.  It was an honor to be with leaders like Noriko Murakami who built PHA Japan Cecilia Martinez Ramirez who founded HAP Mexico, Denneys Niemandt, who one by one, told the stories of the 25 patients diagnosed in South Africa, Yvetta and Peter Makovnikova, developers of a Slovakian PH association, Dr. Majdi Idrees, president of the Saudi Association for Pulmonary Hypertension SAPH, Enrique Carazo Minguez, president of the other Spanish association, FCHP, Gerry Fischer, founder of PHA Austria and president of PHA Europe and that network’s vice president Pisana Ferrari who also leads the Italian association, AIPI.  Many others were there including globally recognized PH physicians, such as Drs. Galie, Rubin, and Simmeneau.

There will be many future World PH Days but the traditions began with this one and I have no doubt the opportunities will continue to emerge.  But, as always, we are driven by the stories.  Here’s one to close this blog.  It is a reminder for me why we do what we do... 

A woman came up to me at the World PH Day celebration and said, “I have to thank you.”  When I asked her why, she said that she had been diagnosed before there was a Spanish association and continued, “I came to the PHA website to learn about the disease and how it affected the lives of others like me. Actually, I have to thank you twice.”  When I asked why again, she said, “When I came to PHA's site I didn’t know how to read English.  The information was so important to me that I forced myself to learn to read the language from the site.” 

I regret that I have forgotten her name but I will never forget what she taught me about the importance of the work that we all do.

PH in China: From blue lips to great heart...

For the past year or so, the ISeek Cultural Center in China has been using film to tell PH patient stories.  This weekend Yue, a Chinese high school student studying in Canada spoke about their latest production on one of PHA's list servs.

Yue shared the video to help build awareness of PH.  Here it is...

May 5, 2012: First World PH Day

In 2010, Juan Fuertes and Irene Delgado of the Asociación Nacional de Hipertensión Pulmonar (ANHP) began a quest.

They believed that it was time for the world to recognize pulmonary hypertension – and they believed that a World PH Day was the way to do it.  Like any new idea, at first there was skepticism but they continued to push forward…and soon people began to understand the possibilities.

They picked a day that has great significance to the Spanish PH community and will soon become a marker for our community worldwide.  May 5 is the date of the first recorded pediatric PH death in Spain.  That was 30 years ago.  Now that date will become a marker for greater global cooperation in the fight against this disease.

Five important goals have been set for World PH Day and endorsed by 34 organizations:

·       Increase awareness and disseminate knowledge of the disease to facilitate early diagnosis. Early diagnosis is important in decreasing premature PH related deaths.

·       Promote access to specific healthcare and treatments that increase quality of life and life expectancy.

·       Promote the concept of treating PH patients as a whole, which includes treating their physical,   psychological and social issues.

·       Unify international criteria for the recognition of Centers of Excellence in PH.

·       Promote research that will help find a cure for PH.

A program has been set for May 5 in Madrid.  It is not just an occasion.  It is an opportunity that I have no doubt we will grow in future years.

This year we can all begin to make World PH Day a reality.  At PHA, we will soon be asking you to adjust your Facebook status to recognize the Day...and in coming days we'll be announcing a lot of other opportunities to engage with our partners throughout the world as we work to make World PH Day a day with a purpose.

The amazing adventures of Steve and Lucas...

A few weeks ago, I wrote a blog titled Pediatric research: the power of one...and a half. It told the story of Steve Van Wormer and his ten year old son, Lucas and how they are building awareness of PH by creating public service announcements.

This is a story of people fighting to make things better; it's a story well worth updating.  Steve and Lucas are an inspiration to us all - showing us every day what’s possible when people decide to make a difference.

Here’s some of what’s been happening since my last blog…

Shortly after the first PSA was released, UCLA Health System issued a press release on the Van Wormer’s efforts.  This led to a number of stories, including blogs on emax Health News and The Baby Center.
Then came a surprise call from the actress Florence Henderson who Steve had worked with several years before.  She had been moved by Lucas’ story and offered her support.

There’s lots more in the works…but one more thing that should be mentioned now.  Steve was recently contacted by a voice over company.  They want to sign young Lucas to a contract!

Listen to Lucas and decide what you think?

This may turn out to be my most updated blog ever.  A few weeks ago Mollie Katz on our staff submitted Steve's PSA's for in WestGlen Communications 4th Annual Give Back Satellite Feed.  Today, (April 17), we got word that all four will be included in a satellite feed on April 19, where they will become available to over 1,000 TV stations!