Celebrating Life at NHF

With my heroes Vaughn Ripley and
Barry Haarde

The beautiful speech given at NHF by chair Jorge de la Riva stressed caring, and the dangers of indifference. Jorge, the father of a teen with hemophilia, deftly drummed home by a quotation from Holocaust survivor Elie Weisel, whose book Night, I just reread a few weeks ago:

“The opposite of love is not hate, it’s indifference. The opposite of art is not ugliness, it’s indifference. The opposite of faith is not heresy, it’s indifference. And the opposite of life is not death, it’s indifference.” 

How appropriate to use Weisel to remind our community that if we do not watchdog our own interest,s we may be hurt–again. And this is why the theme of this year’s meeting was “Nothing about us, without us.” More and more, NHF (and HFA and other groups) are steering the interests of the community, from research, to data collection, to blood supply safety, to genotyping. We’ve come a long way in 20 years, and paid a hard price.
Two more great guys! Derek Nelson and Chris Bombardier

Val Bias, CEO of NHF and person with hemophilia, gave a speech on the many and exemplary accomplishments of not only the NHF but of various groups and individuals in our community. During the videos shown, I thought instead of two people who have done extraordinary, history-making things in our community, just this year—Chris Bombardier, the first person with hemophilia in the world to conquer four of the seven summits. And Barry Haarde, who has now ridden his bike three times across America, to bring attention to the public of hemophilia and HIV. It’s nice that we showcased who we did, but Chris and Barry volunteered weeks of their lives to do something no one else has ever done, which are extraordinary feats even without hemophilia! 

Martha Hopewell with
volunteer Evan Poole

I’m happy to say we did acknowledge them, at the Save One Life Celebration on September 17 at the Intercontinental Hotel in Washington DC, just before NHF kicked off. It was a lovely event, with about 77 attendees, including donors and sponsors. We honored special people who have helped make Save One Life a success so far:
 Over 1,300 people with hemophilia in 12 countries who live in poverty supported directly with financial aid
80 scholarships to foreign individuals since 2012
8 micro enterprise grants in 2014
Over $1.5 million in direct aid!
Laurie with friend and colleague Val Bias,
CEO of NHF

All this goes to people who live on the fringe of life, the poor, the suffering, in places like India, Zimbabwe, Pakistan and Honduras. And we honored Chris and Barry who have raised so much money for us. And our Inspiration Award went to Mark Skinner, former NHF president, WFH president and current WFH USA president (and personal friend) who has inspried me for many years with his brilliant insights, his compassion for the poor and his endless volunteerism. Accepting the award for him was Mike Rosenthal, executive director of WFH USA. We were surprised and pleased to see Doug Loock in attendance, who, back when he worked for the American Red Cross in 2000, gave us our first grant, and was the first supporter to help us!

Doug Loock, in red tie, who gave Save One Life
our first ever grant in 2000

Thanks to NHF for allowing us to hold the even at their event (thanks, Val!); and to ASD Healthcare (thank you, Neil  Herson!) for being our major supporter of the event. Also thanks to Baxter, Novo Nordisk and CVS Health for supporting the event.

Best news of all? We picked up 30 more sponsored children as a result! 
If you want to learn more or support a child, please visit http://www.saveonelife.net

Laurie with Neil Herson, president of ASD Healthcare, accepting
award for Chris Bombardier
Martha with Jessica Swann, accepting award for Judi Faitek

Usha Parasarathy accepting award for
Program Partner of Year
Mike Rosenthal accepting award for Mark Skinner
Eric Hill, president of BioRx
and Board Member
Arwind Manohar of Baxter accepting
award for Barry Haarde

Great Book I Just Read
Blood Meridian [Kindle]
Cormac McCarthy

The author of No Country for Old Men does it again. This is a masterpiece, an American classic, written with such skill and depth that you cannot skim, cannot rush; it has to be savored, thought about, explored. The main character, a young man only referred to as “the kid,” runs away from home in the south and heads west in the 1800s. He meets many groups and characters, but ultimately joins a scalping posse, intent on capturing as many Indian scalps to sell as possible.  Like many of McCarthy’s stories, the theme is bleak, desperate, dusty and desolate, like the land the kid crosses. The main theme seems to be that evil lurks everywhere: there are no good guys or bad guys in the Wild West: just survival. And every single person, whether Indian, white, male or female, harbors evil deep within in the quest for survival. It’s a somber read, but the writing style alone is like a delicate fabric of words, woven so that you see no seams, only a beautiful, dark, and captivating cloth; worth reading if you want to read something by a master. Five our of five stars.

Have an Art!

I received this exciting announcement from colleague and friend Justin Levesque of Maine–a chance for any artist in our community to present their work at the biggest national hemophilia event in September! Now, many of you may not know but I have an artistic side to me, too. I used to knock off some pretty sophisticated da Vincis. And I know for a fact we have some amazingly talented people in the bleeding disorders community. So let’s see what you’ve got!

FOLX is excited to officially announce the opportunity to exhibit your creativity during the National Hemophilia Foundation’s 66th Annual Meeting! Blood Work, the first gallery exhibition to celebrate creative individuals from the bleeding disorders community, will present original works of art and music across several mediums/genres of expression. We invite anyone with ties to the bleeding disorder community to participate in the exhibition using the online form at the website below to submit their work.http://folxfolx.org/bloodwork/

Please take a few moments to carefully read the Terms of Entry. Also, learn more about FOLX’s mission, the jurying process and all submission requirements. If there are any questions about FOLX / Blood Work  or if you’re experiencing any technical issues using this website to submit, please contact Justin Levesque (j@folxfolx.org).

VISUAL ART: Collage, Photography, Woodworking, Performance, Painting, Fashion, DIY house projects… The possibilities are endless! We’re encouraging folks to think outside the box. Submit your creativity in any form! (Due to the nature of the exhibition space, we unfortunately cannot accept 3D works including sculpture, ceramics or installations. However, photographic representation documenting these works is perfectly fine!)

MUSIC: FOLX has joined forces with bleeder music aficionados Blood Vibrations to bring their recent compilations of music from the community to the exhibition. We couldn’t be more excited to have this opportunity. FOLX will construct an interactive exhibition experience that viewers can browse through, listen to full-length music tracks and learn more about both the musicians and Blood Vibrations. In their honor and out of respect for the great work they’ve already accomplished in music, FOLX is calling this experience the Blood Vibrations Listening Center. Please note: Musical submissions do not need to have previously participated in a Blood Vibrations project and should submit their entry using the form at the website. But we highly encourage you consider including your work in a future Blood Vibrations compilation.

http://folxfolx.org/bloodwork/

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