Our partners in Brazil...

PHA's Director of Volunteer Services, Debbie Castro, spent the Thanksgiving weekend in Sao Paolo, Brazil.

She had been invited to speak at the third annual conference of the Associação Brasileira de Amigos e Familiares de Portadores de Hipertensão Arterial Pulmonar (ABRAF), one of 50 PH associations PHA works with worldwide. 

Here is Debbies first report about her experience:

There are about 55 people here at the Third annual meeting of ABRAF.

 For a patient to get on treatment in most states of Brazil, they must take legal action and sue the state to pay for treatment. 25 of 27 states don't recognize PH in their treatment protocols.

Paula Menzes lost her mom to PH and founded the organization 4 years ago. Debbie reported that Paula's father, Paulo, was an excellent MC for the event. They both speak English, Spanish and Portuguese.  That's Debbie on the left, Paulo in the center and Paula oon the right.

We value this and all our international partnerships in the fight against PH...and we're looking forward to hearing more when Debbie gets back!

Thanksgiving...

This year, as every year for the past decade, I am thankful for so many of the amazing people - the true heroes of life - that I get to meet in my work at PHA.

Too often, the great meaning and pleasure of this work carries a bittersweet side to it.  And that is no different this year.

So, this Thanksgiving season, Im writing about two good friends, recently lost. They never met each other but there were a lot of similarities in who they were...
That's Arlene Gabbert in the picture on the left. I rememember the moment it was taken. It was in August, 2007, at a Walk for PH in Minneapolis. The day was windy and wet and people were slow to leave the park shelter for the walk. Then Arlene, a longtime PH survivor, rolled her wheelchair out and led 200 people into the rain and around the loop. It was a brightness of spirit that lit a gray day. I will never forget it.


I saw Arlene a couple of times after that and was saddened to learn earlier this month that she was in hospice. A few days later, we got the word of her passing. We'll miss you, Arlene.

Around the same time, we also learned that Anabel Sivira had passed.

When she notified her fellow staff members of Anabel's passing, Christine Dickler wrote:

Anabel, a PH patient, was the former president of the Venezuelan PH association, FUNDAVHIP, and had recently moved to Costa Rica, where she hoped to establish a new group in a region with very little support. She hoped to apply for a Lantos Grant this year to support that work. Anabel was a positive, indefatigable energy in the community and her life is an incredible reminder of why our work is so important.

This summer, when we wrote about beginning her work in Costa Rica, Anabell sent this note. I think it speaks to making connections, even if they seem small. I hope that it encourages you…

“Friend, you don’t know the peace that is knowing that I have a friend like you and with [such an] Association of patients. This gives me much confidence and motivates me to continue with my foundation. [You all] are my support. Thank you very much.”

I wish I had a picture of Anabel to include but, for now, this page from the Association she led will have to stand as her tribute.

As we give thanks for the advances we are making, we remember all those who make them possible.

 

Calling in the chips for awareness...

Today is PH Awareness Month Blog Day...and I can't think of a better awareness story to blog about than what PHA board member Steve White brought to pass this past week. 

Faith Middleton is a Peabody Award winning (twice) broadcast journalist on Connecticut Public Broadcasting Network.  Dialing back to May 21, 1968, she was a student at Eastern Connecticut State College, a year ahead of Steve White.  For an article she was writing, she convinced the freshman to wear a barrel as part of the Eastern State College Dream Boy contest.  The scene was that Steve was disqualified from the contest due to the fish odor in the barrel.  Faith got her story...and Steve banked a favor due.

Forty-two years later, Rev. White found the picture of that interview and wrote to Faith - who he hadn't seen since college.  He opened the letter with,

"You owe me a big favor and I'm writing to call in the chips."

Well, Faith Middleton paid her debt with style and feeling - and in a big way.  Steve spoke about his daughter, Christen, and PH.  Dr. Terrence Trow who heads up the PH Center at Yale and Colleen Brunetti, an organizer of PHA's Generation Hope young patient group were interviewed in depth...and the interview has been posted online, where you can click on the player and hear it now. 

It's a great interview with a great lesson.  Good things can happen when you make the time to ask.

facebook...finally

Time is always my worst enemy...

There's always too much to do and too little time to get it done.

So, ever since our staff had set up a Facebook account for me a few years ago (during an Awareness Month fundraiser), I have been avoiding it religiously.

Today, I got a note telling me that I had "100 friends awaiting your response".

Being of a generation that gets hives when we let things lie - after a 10 minute tutorial from Debbie - I went to the page and started accepting friends.  In reading back messages, I saw the following from Sarah Peek's grandmother, Bonnie Corey

I am Sarah's grandma. I want to write for Pathlight. I always meant to when she was alive and have to now that she has passed. My youngest daughter (Sarah's aunt) is 12. They celebrated their birthdays every year. She did not know how to have a birthday this year. She turned her grief into a BBQ for their birthday where she collected a jar of "Pennies" and collected 588 dollars for PH. I still look up in the sky and sometimes Sarah is there. Hopefully myself, Aunt Emily, and Sarah's grandpa will be able to join Michelle, Dave, and Nathan at this years walk on Long Island. Hope to speak with you soon.

How could I let a note like that go unanswered since September 3? 

I'm moved and I'm sold.  My next step is to talk to Emma - like Debbie, one of PHA's social networking experts - about how I can keep a Facebook presence putting in 15 minutes a day.

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Stem cell treatments...

Sometimes there's science, sometimes there's guesswork, sometimes there's quackery...

Several months ago, in an effort to help patient understanding and navigation of the very new and untested waters of stem cell therapy, PHA’s Scientific Leadership Council produced a statement and fact sheet on this subject.

Recently, we heard from Nick Hill, M.D. who leads the PH Center at Tufts University. He wrote to make us aware of valuable new information for patients produced by the International Society for Stem Cell Research (ISSCR).  They offer three wonderful new tools: the Top 10 Things to Know About Stem Cell Treatments, the ISSCR Patient Handbook and How Science Becomes Medicine. We took these items to leadership of PHA's Scientific Leadership Council and have just posted mutual links with ISSCR to make this material available to you.

We hope they are helpful to anyone trying to understand the current state of the stem cell world..

Kicking Off Awareness Month in Style...

Here’s a guest blog from PHA staffer, Katie Kroner. Awareness Month is an organization-wide event at PHA, but if you have questions about how to get involved, Katie and her team in the Advocacy and Awareness Department are a great place to start…

The PH community has grown and evolved over the years, and so has Awareness Month, but one thing hasn’t changed. Raising PH awareness is about sharing your story. No matter who you are.

Carol Lindstrom knows the importance of PH education. When she was finally diagnosed, it was because her doctor had recently read an article about the disease and referred her for a right heart cath. This week, Carol and her daughter, Cindy Klein, kicked off Awareness Month in style—they advertised their special event and shared information about the symptoms of PH on TV and in two newspapers.
Here’s Carol and Cindy on KMTV Channel 3

As members of the PH community, we’re part of something big. Dr. Michael McGoon says, “You immediately feel, once you have identified other patients with pulmonary hypertension or other physicians that are dealing with it, that you are a member of a common family directed towards a very focused and consensual goal — to cure this thing.”

During Awareness Month, we’re telling the world our goal and asking them to lend a hand in our climb toward a cure. I hope you’ll join us!

P.S. Special events are just one way to raise awareness about PH, so the fact that Phenomenal Hope for a Cure was one of seven fundraisers that took place this past weekend tells you something about our Awareness Month momentum. From the Inaugural Patrick Garcia Memorial 5K in New Mexico, to the 3d Annual Baltimore PH Walk for Hope, to the 10th annual Stanford Race Against PH, we’re raising awareness coast-to-coast. A calendar of upcoming PH events is available at www.PHAssociation.org/Calendar