December 2010

Merry Christmas!


Wishing all our readers, sponsors and beneficiaries wonderful holidays!

Holiday Time in New York City


I was honored to attend the New York City Chapter’s annual meeting and holiday party. This is a relatively new chapter and wow, have they come out strong and swinging! No wonder with people like Shari Bender and Melissa Penn at the helm.

Dr. Christopher Walsh was the first speaker and gave an informative talk about new developments in hemophilia treatment. Dr. Walsh is director of the Hemophilia Treatment Center at Mt. Sinai Medical Center and a gene therapy expert. It was a relief to hear that there are viable gene therapy trials still ongoing, though to most of us, these have been overshadowed by trials for long-acting factor. I can tell you that many families are not even aware that gene therapy trials are still happening.

Dr. Walsh said, “It’s incredible how many companies are working on treatments for hemophilia.” Treatment will get better, he added. His talk covered regular hemophilia, inhibitors, and treatment for hepatitis C, still a devastating disease for those who contracted it in the 1980s. Dr. Walsh stressed that with abundant treatment and excellent health care in this country that “Bleeding is not an option.” He recommended that people check out www.clinicaltrials.gov for more information about gene therapy and trials on long acting factor and other treatment developments.

I presented the work done by Save One Life and how we support over 650 children and adults with hemophilia in poverty in 11 countries around the world. In this world, bleeding is the only option due to lack of treatment, which we are trying to ease by weekly factor donations to 50 countries. In response to my talk, the NYC Hemophilia Chapter passed around a container and we raised $373 on the spot! This is more than enough to support Nitish, a young man with hemophilia who lives in poverty in Nepal and whom the Chapter sponsors. Many people also kindly brought vitamins for me to bring on my next journey overseas, as many children become anemic from frequent and untreated bleeds.(Photo: friends Kathy Didier of Octapharma and Kim Phelan of Coalition for Hemophilia B)

The highlight of the day was a visit by Santa Claus, who distributed gifts to all the kids.

Congratulations to the NYC Hemophilia Chapter for its great advocacy and community work, and I thank them for allowing me to share in the celebration. New York City–one of our nation’s greatest–and the New York City Hemophilia Chapter–strong and young, looking to transform the lives of many, here at home, and in far away lands.

(Photo: Bleeding Disorder Resource Network displays Save One Life brochures, and sponsors 20 children!)

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.

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