BDI Pharma

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.

Summit 4: Heart of a Lion

I have to just brag about this kid as if he’s my own (with apologies to Cathy Bombardier, his wonderful true mom): Chris Bombardier is just amazing. With so much humility and a soft-spoken demeanor, he has the heart of a lion! He just bagged his fourth summit, in his attempt to be the first person with hemophilia to conquer the Seven Summits—the highest summits on each continent.

It was a tough, grueling climb, the hardest one he has done to date, he confided, and that’s saying a lot. I did Kilimanjaro in 2011, and the last 7 hours of the summit reminded me a lot of childbirth without anesthesia, which I have done twice. Not fun. But the outcome was worth it!

Three more to go, the last being the breathtaking Mt. Everest. I am working out religiously so I can accompany him on a climb. How cool would that be? I’m old enough to be his mother. And proud enough to be his mother! Congratulations, Chris!

Chris’ climbs benefit Save One Life, the nonprofit I founded to help children with hemophilia in developing countries. So he not only climbs for personal challenge, but to advance hemophilia care for those who have none. Heart of a Lion!

Please read this excerpt from his blog, and visit “Adventures of a Hemophiliac” to read the rest of the story, and about his upcoming climbs! (Thanks SO much to ASD Healthcare, Reliance Factor of America and BDI Pharma for supporting Chris’s climb!) Visit www.SaveOneLife.net to learn more.

Denali/Mt. McKinley Part 2: Lower Glacier to 14,000ft

Chris Bombardier's picture
Submitted by Chris Bombardier on Thu, 2014-07-31 09:09

This year, Denali lived up to the hype of brutal weather.   Summit rates plummeted from the typical 50% to the low 30% when we   arrived in Talkeetna, and having a HUGE snow day so early into the trip   made us all a bit concerned. After our snowshoe fun we discussed our   plan of action. Our amazing guide Melis decided we needed to wait for   the snow to settle before heading up the mountain. Not only would this   lessen the danger of avalanches, but also make travel over the feet of   new snow easier. Another group had different plans and wanted to move as   soon as the snow stopped and the clouds cleared. We saw them struggle   past our camp and begin the ascent of Ski Hill. Hours later they were   still in sight. It took them 6 hours to reach a point that only took us 2   hours a few days before. I was so glad our guide made the decision to   leave bright and early the next morning.


We woke up at 3 A.M. the following day and the weather looked great. We packed up camp, organized all our gear, and headed out. Luckily, the team that left the night before broke trail up Ski Hill and we moved quite easily. We found the other group camped not far from where we last saw them. They must’ve been exhausted and had to camp there. Another AMS team left a few hours before us so the trail was also broken most of the way. About 3/4 of the way to 11,000 camp we passed the other AMS team descending back to Camp 1. They cached their gear and were heading back for the night. From there on out it looked like we would be breaking trail. Melis lead to the cache and when we arrived we decided to pick up ALL of our gear and head up the final hill. I was feeling good until this point. Then things changed quickly.



From the cache we only had a few hundred feet of untracked snow to make it to the rest of the trail. These few hundred feet were the worst of the entire trip. I was second on the rope team following our guide Mike. He charged into the fresh snow and was moving quickly. I was trying to step opposite of him so that the snow would be packed down evenly for the others. It was brutal! We were sinking knee deep in snow on snowshoes! I think I would’ve been able to handle it but the pace was too fast for me. Instead of asking Mike to slow down I tried to tough it out. I failed. By the time I said something my legs were dead and we still had the entire hill left. The next 2 hours were brutal. I asked for more breaks and my legs finally came back. We made it to camp and I hoped that was the worst day I would have on the mountain. I knew from then on I would be more vocal about how I was feeling. There is no shame in asking for a break or slowing down the pace a bit.



We had a much needed rest day after our move to 11,000ft camp, at least much needed for me. It was an infusion day and I really wanted to do it outside with the amazing views around. Unfortunately, the weather didn’t cooperate and I was restricted to my tent. The infusion went well and I was ready to roll for our next trip up the mountain. If you want to see the video of my tent infusion check out my Facebook page.


With my body restored I was ready to tackle our next goal, caching gear near Windy Corner on the trail towards 14,000ft camp. We ditched the sleds for this part of the climb which was amazing! I would much rather have a heavier backpack than pull a sled. At this point of the trip we really started climbing the mountain and weren’t just making the approach. Distances between the camps weren’t as great but the elevation gain was pretty much the same. Our first obstacle was Motorcycle Hill. This is where I really felt like I was climbing a mountain. The terrain started getting steep and strangely I started to feel stronger. We knocked out Motorcycle Hill quite nicely and turned up Squirrel Hill. As we were climbing Squirrel Hill our guide informed us of the massive cliff just out of site. That definitely heightened my senses and made me focus even more on every step. A massive avalanche slid over a cliff on the other side of the valley. I have never been so close to a slide and you could really feel the power of it. It was a great reminder that the mountain is always in control.

The weather kept improving throughout the day and when we cached we had an amazing view. It’s always an amazing feeling being on a mountain above the clouds. After we buried our cache we headed down. As we descended Squirrel and Motorcycle Hill I was in the lead of our group. The view was absolutely breathtaking and up to that point, it was my favorite day on a mountain. I felt strong again and confident that this was going to be a great trip. That night we got word that another storm may roll in. We built up wind walls around our tents and prepared to be there for awhile.

The wind picked up overnight and some snow fell but it wasn’t as bad as we thought, but still not great to move in. Melis thought we were going to be stuck for the day until the clouds suddenly started to break. Our guide made a few satellite phone calls to make sure this break would last and decided we needed to pack up and go for it. We took down the tents in the late morning and were on our way to 14,000ft camp just after noon. The trail was harder due to the new snow but we still made great progress. As we reached the top of Squirrel Hill the wind started to pick up and we knew we needed to get around Windy Corner as quickly as possible. Lets just say I get why they call it Windy Corner. We didn’t pick up the rest of our cache this time but we did stop and grab our helmets off the top as we passed the corner. The wind was howling. I grabbed my helmet, continued walking, and then waited for my teammate behind me to put his helmet on. It seemed like it was taking forever. As I glanced back to see what was going on, a freezing gust of wind and blowing snow slammed against my face. I could barely make out my teammate and just turned my back to the wind. The next 10-15 minutes of climbing around Windy Corner were brutal. Then as we crossed onto the 14,000ft side of the corner, the mountain turned peaceful. It was an amazing transformation. We continued on to camp which was still a few hours away. We pulled in around midnight, set up camp, cooked some food, and crashed hard. Another tough, tough day on the mountain. We were now in a fantastic position to get up the mountain and I really felt great at this point.

ADVERTISEMENT
HemaBlog Archives
Categories
ADVERTISEMENT

A Note Regarding COVID-19 and Shipping:
LA Kelley Communications will continue to ship orders as long as the post office remains open. However, it's likely that orders will be slightly delayed. For any questions, please don't hesitate to contact us at info@kelleycom.com
Stay Healthy!