New England Hemophilia Association

We Ride to Remember

“They shall grow not old, as we that are left grow old: Age shall not weary them, nor the years condemn. At the going down of the sun and in the morning we will remember them.” — Laurence Binyon, British Poet

Wheels for the World in Providence, Rhode Island

They rode in the bright sunshine and heavy heat in Providence, Rhode Island, to remember a special person in the hemophilia community, Barry Haarde, and to raise funds and awareness for those with bleeding disorders in developing countries, who still suffer from untreated bleeding. It was Save One Life’s second annual Wheels for the World in conjunction with New England Hemophilia Association. About 25 riders gathered—one family from Pennsylvania!— to share the joy of riding, and gratitude for having treatment in the US to stop bleeding.

For me it was only my second hemophilia event in over two years to attend! I had just returned from Kilimanjaro, so decided to sit this one out and attend as a volunteer—though there was little to do! The team from NEHA and Save One Life had it all under control.

A special guest was Emily “Weez” Cobb, Barry’s sister, who attended with her husband Billy, to say some words about Barry, and what this ride meant to her. Barry, as most people in the community know, was a person with hemophilia A and HIV, who also had a permanently contracted knee. He created the idea to ride his bicycle across the US to raise awareness for those affected by hemophilia and lack of treatment in developing countries. He also did it to honor the fallen: those with hemophilia who were killed by HIV, from infected blood products and treatment in the late 1970s and early 1980s. Barry would eventually ride six times across the US over six years, raising more than $250,000 for Save One Life.

Sadly, he took his own life in February 2018, which stunned the country. He had overcome hemophilia, HIV and hepatitis C, but not mental health issues. He was beloved by the community, and Wheels for the World honors his character and commitment.

Weez reminded us all how much Barry wanted to show the younger generation what was possible, despite hemophilia and all its complications. She also said how important it is to remember those who are no longer with us. Wheels for the World keeps memories of Barry alive, and continues his cause, for which she and her family are grateful. Weez has known much loss: her two brothers and mother all died within a few years of one another; her 17-year-old daughter Patty died in a car crash; and her first husband died also of HIV, as he also had hemophilia.

Remember those who are gone “helps with the grieving process,” she said. And no matter how many years go by, people still grieve.

This year marks the 10th Anniversary of Barry’s first ride: over 3,000 miles from coast to coast.

At the end of this ride, which was about 28 miles, Save One Life and NEHA  provided food and drink at the Narragansett Pub, where we had some surprise news for everyone, especially the Cobb family: my boyfriend, Doug Mildram, has volunteered to re-create Barry’s first ride, from Portland, Oregon to Portland, Maine, in 2023. Seven weeks of riding, at 100 miles per day. Not many people could accept this challenge, but Doug has been training all his life. Doug had met Barry, and they discovered they both worked at Hewlett Packard, and both love cycling. Barry inspired Doug, as he inspired me, and inspired everyone he met.

We hope our community will welcome Doug along the route from coast to coast with open arms as they did Barry, who we will honor with this ride, and to continue to raise funds for families in poverty overseas.

Thank you NEHA and Save One Life for an outstanding event! Thanks to Weez and Billy for flying up to join us—see you next year, when Doug comes riding into Portland, Maine, to celebrate another Wheels for the World, and to remember our beloved Barry.

Gene Therapy: Lookin’ Good!

I happily drove an hour to Westwood, Massachusetts to attend the New England Hemophilia Association’s Springfest, a gathering of local hemophilia families and the companies and medical people who serve them. It was a glorious, sunny day and a wonderful event.
Val Bias, CEO of NHF, attended to present an overview of NHF’s programs and also how funding is raised and where it is spent. Here are some stats:
• There are 57 full time and part time staff at NHF over 10 states
• There are 8 regions for HTCs now, down from 12
• NHF has a PDF you can download called “50 Steps to Cultivating Donors”
• 50% of the NHF’s board of directors are not related to hemophilia
• 52% of its budget comes from pharma
Val stressed to the audience to get involved locally, and to consider joining the NEHA board. He made a compelling plea and is an excellent speaker. Many people told me later they thought Val is a gifted presenter and a wonderful leader for our community.
Next up was a great presentation on gene therapy and new products coming soon by Dr. Ellis Neufeld of the Boston Hemophilia Center. Dr. Neufeld did an amazing job of taking highly complex material and breaking it down for us. Some highlights:
 
• The St. Jude gene therapy trial that has been in the news: only 6 FIX patients in trial, using “gutted” virus (no capacity to reproduce).
• Of 6, only 1 really took to it but he got higher ALT (liver
function measurement).
• Problems with the study: not enough data, immune response a threat and you can’t be retreated
as you will have an immune response.
 • Long acting factor: many companies working on this. Everyone has different half-lives; children have shorter
ones than adults. So how long is long? New FIX drugs could be 3-5 times longer acting, meaning you might treat once every 10-14 days?
• What will price be of the longer acting drugs? What is the worth for a theoretical improvement of
life? No one yet knows.

(Our next issue of PEN in May examines all these in depth: be sure to download it!)

Dr. Neufeld was very positive about current gene therapy efforts. He made us all laugh by saying that our community has been promising us gene therapy roughly in every ten year cycles, but this time, he truly feels there is a great chance we will find it.
Just before lunch, we had panel presentations from all the pharma and specialty pharmacy reps on their patient assistance programs, delivered all above the growing din from the Bar Mitzvah next door!
These were all great presentations, and we had an attentive audience. I saw so many of my friends in hemophilia, and truly enjoyed myself. I hope you can all attend a local hemophilia event and take part in your community! We had a rap session with the moms, and one among us had an 8 month old. We all remember the feelings of when our babies were diagnosed. We felt for her. Everyone rushed to welcome her, praised her for attending, and offered email addresses and phone numbers. It never fails to amaze me how tight our community is. We are friends, and family, for life.
 
 
 
 
 
 
 
 
 
 
 
 
Great Book I Just Read
Murder in the High Himalaya: Loyalty, Tragedy, and Escape from Tibet
by Jonathan Green
This is a rare book that provides multiple levels of reading, on history, ethics, exposé, culture, politics and an unforgettable story of a young girl’s perseverance, determination and tragic legacy. I love real life adventure and survival books, especially about mountain climbing and/or history, and also books about how one person can change the world. This book has it all. On September 30, 2006 a cruel and thoughtless murder of a 17-year-old Tibetan nun (just a girl truly) by Chinese border guards triggered an avalanche of scrutiny in the press, world agencies, political leaders–and in the consciences of the Western mountain climbers on a paid guided climb who watched in horror. Kelsang Namtso was trying to escape Tibet via the mountain Cho Oyu when she was gunned down in full view of climbers, one of whom videotaped it. The tape went viral—the first time human rights violations against the Tibetans had been filmed—and the rest is history. This book tells this amazing story in gripping and often exquisite prose (much like Jon Krakauer) and provides powerful parallel stories of Kelsang and the mountain climbers, which later intersect dramatically and make history (much like author Erik Larsen). You will be amazed at the courage of this 17-year-old, and at the response by those who witnessed her death. Green’s compelling narrative will teach you much about Tibet, how it has suffered under Chinese rule, and how the West has looked away until one lone video clip, still available on YouTube, shamed us into action. Green raises excellent questions that beg an inward look at our own souls, and portrays Tibetan lives without freedom that make us instantly cherish our own freedom. A must read. Four out of five stars.

Good Day for Bad Blood



December 1 happens to be World AIDS Awareness Day and we remembered the fallen heroes in our community with a very special showing of the new movie “Bad Blood” by producer/director Marilyn Ness. I was glad the movie was being brought to Boston, as it gave our community the chance to get together and relive some sad moments, but also to honor those who did so much for us. The US has Veteran’s Day to honor its soldiers who have kept us free people; those who died of hemophilia and HIV also gave their lives so that we remain free.

The event was well publicized and well attended, despite the drizzly weather. I saw many friends, and many of the young men with hemophilia who attended I have known since they were born!  The first person I spied was John Rider, who works with COTT, the organization that hosted the event. The show took place at the West Newton Cinema. Who was the most dedicated attendee? Dr. Marion Koerper of San Francisco, who I had just bumped into in New Orleans two weeks ago, and who told me that she was going to be in West Newton on December 1 visiting her sister! She agreed to come and attend the movie, and indeed, she had just landed at Logan Airport and came straight to the show! Such dedication!

I’ve seen the entire movie, of course, as I just wrote about it in PEN. But it was powerful to see it in a theater with all my colleagues, friends and peers. Powerful movie. We were very lucky to have three stars of the movie with us: Dr. Glenn Pierce, who now is VP at Biogen Idec, in Cambridge, and who brought about 30 Biogen people to the showing; Mary Lou Murphy, whose sons died from HIV; and Terry MacNeil, who also lost her son to HIV.

I would strongly urge everyone to see the movie when it shows locally at a chapter event. It’s not to be missed. It is extremely well done, powerful and captures a bleak time in our history and exposes the many cracks in the blood banking industry and in the watchdog groups and corporations that failed to act to stem the contamination of blood products. When you do see the movie, please also read the November issue of PEN, which will help fill in any gaps in the movie’s perspective of history.

Laurie, Jessica Swann of Biogen Idec, Mary Lou Murphy

And please consider buying a copy. Go to www.necessaryfilms.com. You will feel sad, maybe scared, but certainly grateful… that your child escaped this tragedy, and that he or she is enjoying excellent products today because of the sacrifices so many made.

Thanks to COTT for hosting the show; proceeds will go towards a proposed national monument to the community members who died; Japan has one, England has one. Why not us? And why is it proposed in Massachusetts? That’s where Tom Fahey and Jonathan Wadleigh, two founders of COTT, lived.

Great Book I Just Read
The Other 90% by Robert Cooper

This is one of my favorite motivational books. There are no exercises or quick fix-its. Just good advice on how to develop your potential, determine what you want to pursue in life, and how to keep balance. The other 90% is the part of our brain we don’t use. The book’s premise is that we use so little of our brain potential that we could be living better lives by tapping deeper into ourselves, and by developing the courage to explore and use it. You can read this book in a day, and come away excited, energized, hopeful and maybe even with a plan. I agree with this book’s message so much, and it’s why I do crazy things like skydive; you don’t know who you are until you know what you can do. Keep pushing the envelope–and this book will help you do that! Three stars.

SpringFest!


It doesn’t feel quite like spring yet in New England, but Saturday was SpringFest, the New England Hemophilia Association’s annual family symposium. I was very happy to be home, so I could attend this event, a mere 15 minutes from my house. Our new executive director of NEHA, Kevin Sorge, said it best: “This is like family.” And it is. We were reunited again, for some of us 20 years now, our sons grown but our desire to see this community continue to progress still burning bright.

Even some of the pharmaceutical and home care reps have been part of our lives for 12-20 years. How fast it has gone by!

Linda Price of Virginia will be thrilled to know I finally met her son Greg, now living in the Boston area. Last time I saw Greg he was about 10. It was a lively time, because of how long we’ve all known each other and how rarely we get to see one another.

The speakers and topics were good, and the turnout was excellent, despite the rain. There were lots of children, and teens.

The highlight of the day without doubt was a moment that reduced us all to tears: an award ceremony, with our shining star, Leland Smith, age 15. I first met Leland when he was only a toddler. He has hemophilia, and a devastating inhibitor that at times keeps him wheelchair bound, as he was this day. I know his story well, and I can tell you that not many people has endured suffering like this child. The time he has spent in the hospital, the treatments he has undertaken, the missed school, the excruciating and unrelenting chronic pain; and yet he wants to be a doctor, and is an active lobbyist for NEHA. He has traveled to Washington DC and also to the Massachusetts state house to present himself, to help NEHA get bills passed to protect the rights of those with hemophilia. To know how much this kid has gone through, and to see how at such a young age he is active socially, well… we all crumbled inside in admiration of his character and his strength. Leland reminds me of the words: It is in the deepest valleys that the stars shine brightest; it is pressure that turns coal into diamonds. Congratulations to Leland, a true leader of a new generation of young men with hemophilia. Thanks for making such a memorable day for us all!

Great Book I Just Read: Mawson’s Will by Lennard Bickel.
Speaking of pain and suffering, you haven’t read anything till you have read this book. Dubbed the greatest polar survival story ever, this tells the true story of Douglas Mawson, a giant in the age of polar exploration in the early 1900s. Mawson, an Australian, was already a veteran polar explorer at age 29 when he traveled to the Antarctic in 1911 to seek the magnetic pole and to chart unknown territories. Splitting into three groups, he and two other men part with his crew for a few months and enter the incredibly hostile terrain. Mawson loses both men on his team and is left utterly alone, without enough food, shelter or dogs to see him back, in 50 degree below zero weather with gale force winds…. for one month. How he survives is a page-turning, gripping and miraculous tale. Mawson is responsible for Australia’s claim to 45% of the Antarctic. His tale is legend. This was the fourth time I’ve read this book and it gets better each time. Four stars!

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