I’m sitting at my desk, waiting for a snow storm to roll in, and thinking about how we are ending this amazing year. There was the usual travel to attend NHF’s and HFA’s annual meeting, and I also attended the Bombardier Blood movie showings in California (at FFF Enterprises and Genentech), Michigan, North Carolina and Utah!
My work was honored at a spectacularly beautiful gala hosted by Hope for Hemophilia in New Orleans, where I received a beautiful award and watched a video about my work–that was amazing and surreal! Save One Life, the international nonprofit I founded, received an award at NHF’s gala in September.
I cycled in Massachusetts to raise money for Save One Life while honoring the memory of Barry Haarde, climbed Kilimanjaro in Tanzania to raise money for it as well, and rode a bike for three days with the likes of Kim Philo and Michael DeGrandpre, through three states to raise money for HFA–Gears for Good.
I visited Haiti, Tanzania, Kenya and the island of Zanzibar. Haiti was a less than 24-hour visit due to the violence, but something good came of it, as we established enough of a toehold to start the first ever hemophilia program in Haiti! If nothing else happened this year but this, I would be completely happy and call it a successful year!
I visited many old friends and colleagues throughout the country, and also hosted visitors from India, the Philippines and Kenya in my home. I endured a torn meniscus, back spasm, altitude sickness or something like it, flipped over my handlebars in Maryland in a tunnel, and was hit by a car while on my bike in Massachusetts. But I’m still standing!
For fun I saw Metallica, the Rolling Stones, the Who and many other bands, visited the Museum of Natural History in NYC, Buddy Holley’s hometown of Lubbock, Texas and the crash site in Clear Lake, Iowa, and hiked up Mt. Washington in New Hampshire and all through Zion in Utah.
Save One Life was restructured and welcomed a new executive director, Chris Bombardier!
It’s been quite a year. And so we are finishing our 29th year of existence at LA Kelley Communications! Next year is our 30th anniversary…. 30 years of bringing original and ground-breaking publications, all free. We thank our sponsors for supporting our work here in the US, which supports indirectly our work in developing countries. And we thank you for reading our publications, allowing us to help bring news and insight about bleeding disorders to you, and for all your support for Save One Life!
When our team was dividing up who will represent Save One Life at various showings of “Bombardier Blood,” the incredible movie about Chris Bombardier’s Seven Summits Quest, I jumped at going to Utah. Utah is one of my favorite places: drenched in southwest colors of red and yellow, with soaring mesas and fins, and deep, rich canyons, it’s an adventurer’s dream. It seemed to fit the message of the movie, too: go out. See the world. Climb, hike, walk, smell fresh air, dream, do.
After spending a week exploring Antelope Island, Moab and Zion, I headed north on I-15 and reached Salt Lake City. The Utah Hemophilia Foundation’s executive director Scott Muir was there to greet me. And not only greet me, but to give me the gift of his paintings, bound as photos in a hardcover book! All the paintings are of Zion National Park, which he well knows I adore. Scott is a talented photographer and artist.
And apparently, executive director! We had a huge turnout for the event. About 150 or more families arrived to socialize, have dinner, enter raffles and engage with the various pharma and specialty pharmacy vendors. I was so happy to meet up with long time friends, colleagues and Facebook friends (some of whom I have not yet met in person). There were so many children, and while you might think their presence might disrupt a movie, the children were as good as gold.
I gave a few words before the movie started, and let the audience know this amazing stat: out of the 108 billion people who have ever walked this earth, less than 500 have ever accomplished all Seven Summits. I’m not sure you can easily even measure that! The audience was hushed as the movie began, and for 90 minutes, were riveted to the screens.
After the movie, one 14-year-old asked me a very leading question: how did Chris keep his factor warm on the mountain? “Why don’t you ask him yourself?” I replied. His eyes lit up! Chris must seem like a hero to so many, and thus, out of reach. But he is very approachable. The young teen was thrilled to get Chris’s email address, and I had to ask him: was he interested one day in doing mountain climbs? He nodded his head vigorously and smiled! Come join us, I invited him!
And coincidentally, Save One Life will be hosting a three-day hike to the bottom of the Grand Canyon in 2020!
Bombardier Blood is about making dreams come true, and if you can see it at your local chapter, please do! You may believe anything is possible.
Thanks to Utah Hemophilia Foundation for hosting this movie, and to all who sponsored the event. Special call out to Octapharma, which sponsored Chris’s last two and most expensive climbs, and for daring to take a risk on a young man with a big dream. Sometimes the riskiest adventures yield the greatest joys and successes!
Bombardier Blood was created by Believe Ltd, and is now produced by Alex Borstein. It showcases not only Chris’s climbs but also the disparity of treatment in bleeding disorder between developed and developing countries, being addressed through the work of Save One Life.
Last week, I traveled to California, for an exclusive showing of the wonderful movie “Bombardier Blood” to employees of NuFactor, the hemophilia distribution program of FFF Enterprises. We gathered at the Omni Resort in Carlsbad, where Chris Bombardier and I marveled at the brilliant blue skies, warm sunshine and swaying palm trees. The movie was warmly received; there was a standing O before it even ended, in honor of Chris’s achievements! But the best moment for me was being able to tell employees the gratitude I have for their founder and CEO, Patrick M. Schmidt.
Patrick and I have a long history, meeting on August 12,1995, when he was attending a business meeting in Boston. He called me the previous week, out of the blue—I had no idea who he was. He said he had heard of me, saw my books, admired my work and independent stance (I was not part of an HTC, specialty pharmacy, manufacturer or nonprofit. Back then, you were one of these). He was just entering the hemophilia community, and wanted to pick my brain. So we met over a cup of “chowda” in downtown Boston. I found Patrick sincere, eager to get involved, and respectful. And he remains so to this day.
During lunch, he asked me a question that reverberates today: What can I do to make a difference?
It happened that I was still reeling from the murder the previous summer of a beautiful little 5-year-old boy. On a hot summer day in August 1994, I was leaning against my kitchen counter and opened the Boston Globe. The headlines screamed that a little boy from Easthampton, Massachusetts had been murdered. According to his stepmother, some strangers entered the house a few days before, on a quiet Saturday, smothered the child with a pillow, hit the stepmother in the head, and left the baby in the crib unharmed. Nothing was taken. There were no footprints, fingerprints and no one saw anything.
The greatest shock was that I knew this child. He had hemophilia. His grandmother, Jennie Gosselin, had been sending me photos and stories to publish in a children’s newsletter I once had, called “Factor Fun.” The headlines dominated for the week, until the stepmother was arrested for premeditated murder. She remains in prison to this day, and will be for life. The reason she killed this child? His medical bills were too expensive, and she wanted another child but couldn’t afford one.
This touched Patrick deeply. That a child would be murdered because his medical bills were too expensive was abhorrent. Also, Eric was the same age as his daughter, Natalie. I can see even now the look of horror and dismay on his face as he considered all this. Did he want to make a difference? I suggested a scholarship in Eric’s name, so that he would not be forgotten. Patrick immediately approved. The scholarship is now in its 23rd year! It has helped hundreds of students attend college.
I remained friends with Eric’s grandmother right up until she passed away two years ago. Before she moved to North Carolina, I would visit her in Easthampton and we would stop by Eric’s grave. She was forever grateful to a man she never met for his act of compassion and generosity.
If you are a US student with a bleeding disorder in your family, you can apply for the Eric Dostie Memorial Scholarship. This year’s application is closed, but mark it on your calendar for the fall, when you can apply again. And check out our scholarship page on our website, which lists even more you can apply to.
Many thanks to Patrick M. Schmidt for his friendship, mentorship and support. The movie “Bombardier Blood” showcases Chris’s climbs, but also the work we do at Save One Life. Patrick, by the way, is our number one sponsor, supporting 180 children who live in poverty. And he is our top donor. He believes in giving children a chance in life.
He has changed so many lives around the world… including mine.
Well I’m ready for a rest! Last week I was in Orlando at NHF’s 70th annual meeting, and last night, at the New England Hemophilia Association’s Red Tie Soiree in Worcester, Massachusetts. And while there is so much happening with new products, with gene therapy coming closer, new programs for our community, and the spectacular movie Bombardier Blood ready for viewing nationwide, the overriding feeling I have after these major events is… this is family. We are truly a family, united by blood.
As I’ve been in the community for over 30 years now, I’ve come to know so many people, and have watched as babies have grown to young adults, starting families of their own, some also with bleeding disorders. Our family grows, and grows older! My friends and I, all young moms and dads when we came into this family, are now in our 60s, looking back at the incredible path this bleeding disorder family has traveled together.
One path literally is the one that led to the movie Bombardier Blood, which debuted last Saturday in Orlando. To a standing room only crowd of over 500 people at 7:15 am, the Octapharma-sponsored event and movie about Chris Bombardier’s epic Everest summit brought laughter and tears to all. It is a stunning film, directed by Patrick James Lynch—whose name you all should know as well as Chris’s by now! These two young men with hemophilia have skyrocketed to fame with their achievement. It makes us, the older moms and dads, incredibly proud. We all kind of feel like they are “our” sons, or like our sons. Sons of our community, doing daring things for our community.
I was honored and fortunate to travel the actual path to Everest base camp with Chris and his wife Jess, and share in part of that historic journey. All the while, I felt like the mother I am, watching out over both of them (as if Chris needed it!). Viewing the movie that morning brought back so many memories and feelings of that journey in May 2017.
So much of the NHF meeting was connecting, with old friends and new, with families in need and families who can share and give. And at the final night we listened to music and danced the night away. While blood unites us as family, music unites us in joy.
I wish everyone could attend NHF’s or HFA’s annual meeting, though I know it’s improbable for most. The meetings are often held in the same spots: Dallas, Chicago,
Anaheim, Orlando, San Diego. You’ll never see one in Boston—too expensive. Not everyone can afford to go away by air and stay at hotels. While there are scholarships for first-time families, it sadly still leaves many in our family on the fringe.
And that’s why we have local chapters and state bleeding disorder organizations. Does your state or region have one? The New England Hemophilia Association has become one of the best run organizations in the US. It wasn’t always that way. As we heard last night, when Charlie Dougherty, who served as treasurer and who passed away earlier this year, found when he joined, it was poorly run and $22,000 in the red. He straightened it up, but it took Rich Pezzillo, a young man with hemophilia, to rocket it into the highest level, and not just by squaring away financials. Rich has breathed new life into NEHA, infusing it with passion and commitment like never before. I confess I never donated to NEHA, even though I’ve lived in New England all my life. But with Rich’s leadership and his crackerjack team, we are all excited to give and participate once again. Last night proved it. I sponsored three tables and invited the team at Save One Life to come and experience the joy of this family reunion, and they had a blast, amazed by the comradery and caring.
In many ways, I find I can enjoy our bleeding disorder family simply by being local. So there’s hope for you too, to join this family by seeking out your local organization. Is it active? Does it have programs? NEHA has programs every month, sometimes every weekend! Does your chapter do a fundraising walk? Have a women’s or teen program? Is there someone to call to learn how to get involved?
I would really urge you to do everything you can to participate. Bleeding disorders can throw a curve ball at you at any time, as life can too. This family, this “Wicked Strong Family” as we say in Boston, is here to help. These friends have become more than friends—they are truly family.
And when I attended the wake last Friday of my first cousin’s husband, who died unexpectedly at only age 61, you realize how family is always family, no matter what. I visited with my cousins, who I rarely see anymore, except on Facebook. We were playmates as children, but life gets busy, the family gets bigger and reunions consist mostly of funerals now. Still, we have history and we are united by blood. It was good to see everyone again; I still love them all.
We’ve lost a lot of people in this community this year and as life goes on will continue to lose more. It’s at this time that family comes together: whether nationally, or locally. Find out more about your local chapter; meet your hemophilia/bleeding disorder family. Get involved; give of your time or support. We are all united by blood, and can create the family we need by connecting, caring, sharing and loving.
And a little celebrating and dancing doesn’t hurt either!
“Exploring the Next Frontier” was the theme for the 69th annual National Hemophilia Foundation meeting in the dazzling city of Chicago. A record-breaking 2,987 community members flocked to the Windy City (do you know why it’s called that?)—patients, treatment center staff, industry representatives and hemophilia organization advocates—to share stories, to educate, to network, and to learn.
For me, it was my 25th annual meeting, and more like a huge family reunion. With so many friends from past meetings and local chapter meetings and correspondence, on top of all my new friends on Facebook, it was almost impossible to go from point A to point B without bumping into someone I knew!
Brian Andrews, chair of NHF, opened the weekend-long event Thursday evening by welcoming everyone; Val Bias, CEO, stressed inclusiveness and our diversity: individually he welcomed the VWD community, the FX, FI, FXIII, women with bleeding disorders (not VWD but hemophilia!) communities, who all stood up. Val then placed the focus on the National AIDS Memorial Grove, San Francisco, on which names of those with hemophilia lost to AIDS are carved. A touching video showed the memorial, with comments from community members, in particular Jeanne White-Ginder, whose son Ryan White, our own national hero, in 1982 put a tender young face to the scourge of hemophilia/AIDS by refusing to accept being ousted from his school. His stand led to a national movement to better understand the suffering of AIDS patients, the discrimination they faced and the erroneous fear that electrified Americans, most of whom believed you
could contract HIV just from a handshake.
It was a beautiful video, and Jeanne concluded it with a heartfelt, tearful speech about her love for our community. Val asked for donations, to raise $50,000 for the Memorial, and by the close of the conference, $41,000 had been raised!
The next few days were jam-packed with activities, educational sessions, and walks through the industry and nonprofit booths
downstairs, where consumers could play games, speak with reps, and pick up literature on products and services.
Our own Save One Life had a booth that actively received inquiries on how to sponsor a child with a bleeding disorder in a developing country.
The highlight of my visit was the Octapharma symposium Friday morning, showcasing the documentary trailer for “Bombardier Blood,” directed by Patrick James Lynch, who has hemophilia A. Patrick shared the incredible story of the making of the documentary—a project of which I was a part! I traveled to Nepal (visit #4) to introduce Patrick and his team to the Nepalese Hemophilia Society, and to watch as the team filmed Chris Bombardier (factor IX, from Denver) visit the treatment center, travel to patients’ homes, and attend a fun cultural evening before heading out to attempt to summit Mt. Everest. I also accompanied Chris, his wife Jess and photographer Rob Bradford, all the way to Everest Base Camp.
Although I was with them the week in Kathmandu, and then endured the rugged 9-day trek to base camp at 17,500 feet, and then shivered three days at base camp, with 1° temps at night, nothing, nothing stirred me as much as watching the documentary. The full impact of Chris’s sacrifices, the months of training, overcoming fears, and the pressure on this young man to succeed, hit me full force as we saw in six minutes scenes from Denver, from Nepal, patients, base camp… and Chris on the summit, talking through his oxygen mask, holding a banner on which was written the names of Nepalese patients with hemophilia. He did it for them; he did it for us.
Over 360 people had permits to climbing Everest that season; 60 summited, including Chris; 10 died, including a world class alpinist, Ueli Steck. Chris risked his life to achieve something no one in history had done: being the first with hemophilia to summit Mt. Everest. Listening to Patrick, and seeing the beautiful trailer, we were all wiping away tears. The human heart has so much potential for courage, for sacrifice for our fellow humans, for overcoming fear and pain. Chris embodied all this.
I worried for the next speaker: how do you top that? But you know, Seth Rojhani, a young man from Denver, nailed it. His story was incredibly motivating and uplifting: being born with hemophilia, then losing your ability to walk after having a spinal bleed, and the surgeons severing your spine accidentally. But nothing has stopped Seth. He loved sports, and with the full support from his wonderful parents (who I am proud to say I know) he participated in many sports!
With his favorite basketball team the Denver Nuggets, Seth Rojhani went on to form “Rolling Denver Nuggets,” a basketball team for wheelchair participants. I loved when he shared his formula for success:
He stayed on a consistent prophy schedule; He rested until all injuries healed; He visited his HTC often. Seth received numerous athletic awards, including the Bronze medal for his team in the Maccabiah Games in Israel this past July. And he promptly pulled out the gleaming medal for the audience to see! Seth said, “Hemophilia is a speed bump, not an obstacle.” He also shared that his father, Ira, told him, “Think positive and good things will happen.” His belief in this way of thinking has never let him down.
When asked of the three participants—Patrick, Chris and Seth—what was the biggest challenge they faced in life, Patrick mentioned losing his brother Adam. His brother never identified with the hemophilia community, and felt isolated, alone. He might as well lived on the outskirts of Nepal, exclaimed Patrick, without factor or comprehensive care. Patrick’s greatest
challenge is overcoming the loss of his brother. Chris’s? Not Mt. Everest but needles! Chris has a needle phobia! And Seth? Being told no so much in his life.
The speakers deservedly received a standing ovation for their incredible stories and work. The three days were filled with symposia and sessions. For first time, the LGBT community had their own session, led by our own (New England-based) Justin Levesque. And I am proud to say that PEN was the first publication in our community to publish an article about the community needs, also written by Justin.
Women with bleeding disorder and those with VWD were also given lots of meeting and air time. You can see a big shift in mindsets this year about inclusion in our community. Those on the fringe are now being heard.
There were also sessions for siblings and one for men only; sessions about pain management, addiction, and gene therapy. The only bad thing about NHF’s Annual meeting is that there is so much to see, hear and do! I couldn’t take in everything unfortunately.
The event ended with a stunning visit to the world famous Field Museum, sponsored by Bioverativ, where families could see the wonders of nature and natural history. My favorite display are “The Ghost and the Darkness,” two man-eating lions from Tsavo, Kenya, which were killed in 1898 after they had killed many workers on the railroad. A Hollywood movie starring Val Kilmer and Michael Douglas tells a somewhat fictional version of the story. It’s a good story but better to see them for real at the museum.
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