WFH

Uniting Globally

Untreated Hemophilia,
Dominican Republic

I
attended the annual National Hemophilia Foundation meeting from November 7-11,
as I have done since 1992 faithfully. As usual it was filled with interesting
sessions on treatment of hemophilia, attractive displays of company booths and
wonderful reunions with many friends and colleagues. But something new: in his
opening speech, NHF CEO Val Bias, a man with hemophilia and one of the foremost
advocates in helping to get the Ricky Ray Law passed, spoke about uniting our
communities globally. This is the first time I believe that NHF has shown a
targeted interest in helping the world’s 75% with hemophilia who have little or
no access to care.

Laurie with Nancy S., who has a
child with VWD

This
was exciting to me as I have been working to help the underprivileged with
hemophilia since 1996. First with a leadership training program called
L.I.G.H.T., then a factor donation program called Project SHARE, still ongoing,
and my nonprofit Save One Life, which sponsors children overseas. I was
thrilled that NHF would bring its resources and brainpower to help those in
need.

Why
not before now? Timing, focus. We have been through many phases: the
contamination of the blood supply and subsequent infection of thousands occupied
our time and focus for years. Then came product shortages. The inhibitors. Even
NHF had its own problems internally and struggled to assess leadership (CEOs
came and went) and structure. That seems behind us now. And with Val’s leadership
and vision, NHF turned its powerful eye overseas, especially to Africa.
Val
Bias and Neil Frick visited Nigeria in September, marking the first time that
someone from NHF has been to Africa. I’ve been traveling there since 1999, when
I first visited Zimbabwe and Kenya, and am returning on November 30. Finally,
finally America is showing its leadership and true giving nature in joining the
international community and participating in partnerships that will help
hemophilia nonprofits and its members in developing countries.
Meeting FB friends:
With Liz Purvis and Tater!

Val
has bigger plans: the 2016 NHF meeting will be held in Miami, and Miami was
also selected for the 2016 World Federation of Hemophilia biennial meeting.
This means that attendees to either meeting can also extend their visit and
join the other meeting. WFH gets about 4,000 visitors and NHF gets about 2,500.
This would potentially be the biggest meeting on hemophilia in history, and on
American soil.

With Gary Cross (L) and Dana Kuhn,
of PSI

With Mt. Kilimanjaro teammates
Jeff Salantai and Julie Winton
Craig Price, Erik Melde and Derek Nelson
of Axiom Therapeutics

I
really applaud NHF becoming involved globally. The world needs it and it’s good
for us. I’ve always felt that we have more than enough to share, if we can just
find ways to do it. With NHF’s power, hemophilia care globally can progress at
a faster pace to reach more in need, an estimated 300,000 who suffer from this thoroughly
treatable disorder.

And looking at all the photos from NHF here, I realize that almost evey person pictured either sponsors a child with hemophilia or VWD in a developing country through Save One Life or has contributed in some way to Save One Life or Project SHARE. From summiting Kilimanjaro to raise funds, to making handicrafts that support a child, to sponsoring one directly, Americans have already been uniting globally—and now can take pride that their national organization will as well.

“Arrrr!” With Matt Collins of CSL Behring
With Reid Coleman of NC

The World Meets in Istanbul

I am in historic and amazing Istanbul, Turkey, site of the capital of the once Byzantine Empire and this week site of World Federation of Hemophilia Congress, which brings together people involved with hemophilia from all over the word. It is the largest hemophilia gathering, with over 4,000 in attendance! Our own Mark Skinner, person with hemophilia and former NHF president, is the WFH president.

Mark gave a wonderful talk tonight at the opening reception, followed by a Turkish symphony, with exotic and rich music, and traditional dancers. Afterward, all 4,000 attended the exhibition hall, where the manufacturers and also the hemophilia national organizations from many countries had booths. This is an all week long event, which gives attendees the chance to hear what other countries are doing in terms of hemophilia treatment, research and best practices. It also is a great chance to network. For me, in the international community for 12 years, it is like a family reunion. Already I have met with representatives from the Dominican Republic, where we just held camp, Pakistan, Russia and India.

Visit the WFH website at www.wfh.org to learn more about their efforts to help educate, organize and bring treatment to people with hemophilia worldwide.

Now, I hope to blog later this week but I blew my converter within hours of arriving, and may not have battery power! I’ll do my best… in the meantime, please read about Project SHARE’s trip to Ecuador through our What’s New on the home page. There’s lots happening internationally!

(Photo 1, L to R: Dr. Armando Pena, Honduras; Laurie Kelley; Angel Almodovar, Talecris; Vicente Soriano, father of child with hemophilia and board member FAHEM, Dominican Republic; Dr. Angel Beltran, Talecris El Salvador)

(Photo 2: Haydee de Garcia, president, FAHEM, Domincan Republic; Laurie Kelley; Dra. Rosa Nieves, hematologist, Robert Reid Cabral Hospital, Domincan Republic)

Biking to Istanbul for Hemophilia


Kiss Laszlo lives in Romania. He’s the father of Daniel, who has severe hemophilia A. I’ve been to Romania twice– a beautiful, pastoral country, with rolling mountains and quaint villages. I’ve visited with the hemophilia patients and doctors, and helped out with hemophilia camp in 2006 on the Black Sea. We donate quite a bit of factor to Romania. Only recently has the government begin to buy substantial amounts of factor for its people. A lot of patients, despite the excellent medical care from its wonderful doctors, are crippled. You just have to have factor to keep joints in good shape.

Kiss knows this and knows we need to raise awareness of hemophilia needs. He came up with a brilliant idea– to bike all the way from Romania to Istanbul, where the World Federation of Hemophilia starts its biannual Congress next Sunday. “I decided to do this trip not only for my son, but for the whole hemophilia community. I shall do 1089km in 14 days,” he pledges on his blog, which you can (and should) read at

http://kkisslaci.blogspot.com/

Kiss is blogging along the whole journey! You can read about his exploits right now. “During my trip I shall stop in each important town, no matter if it’s Romanian, Bulgarian or Turkish. There I shall meet the local hemophilia associations and the local media too. Once arrived there in the name of our association I want to get in contact with other similar organizations to build common actions and develop a partner relationship over the medium to long term.”

What a wonderful idea and what devotion! I cannot wait to meet him. I will be off to Istanbul myself on Friday, and will also be blogging about my trip. Please tune in and see what is happening in the world of hemophilia.

(Photo: Kiss, in red, surrounded by members of the Romania Hemophilia Association)

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