Blog Archive

Monday, November 19, 2012

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

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