Blog Archive

Monday, December 27, 2010

Some Real Christmas Cheer

We got our white Christmas after all and are buried under snow here in the northeast!

And it was a beautiful Christmas in Puyallup, Washington, when students at Cascade Christian High School raised more than $13,000 to help their classmate with hemophilia.

Debbie Cafazzo, staff writer for The News Tribune wrote that Allenmykael Harlin-Gonzalez, 17, was hospitalized and needed their help. A bright young man with a 4.0 grade-point average and often in a wheelchair, Allenmykael, on November 24 incurred an infection in his hip joint, his body eventually going into septic shock.

Cafazzo writes that a member of Associated Student Body team said, “We thought and prayed about what we wanted to do.”

She continues, “Being teens, their thoughts naturally turned to social networking. That’s when Operation Bless Allenmykael was born on Facebook. Students started spreading the word through the school’s Facebook page that they were raising money for their classmate. At school, kids from elementary to high school age (Cascade Christian also includes a junior high and three elementary schools) dug into their pockets and piggy banks for spare change. One woman brought a check for $2,000 to the school office.

“Within a few weeks, the students had raised more than $13,000 in cash and gift cards. Someone also donated a motorized wheelchair for Allenmykael to use. Students are also hoping to be able to help in the future with a new van to replace the family’s sputtering 21-year-old vehicle.
‘I felt so blessed to be able to bless them and be part of something so big that God was doing,’ said Carder.”

Allenmykael was released from the hospital in time to spend Christmas home and with his family. Cafazzo quotes Cascade ASB President Stephen Mahnken: “A lot of people might think that we made their Christmas. But they really made ours.”

Allenmykael hopes for a career in medicine, and sets his sights on the prestigious Johns Hopkins University. If he succeeds, that would truly be the Christmas gift that keeps on giving.

Read more: http://www.thenewstribune.com/2010/12/24/1477254/students-rally-for-one-of-their.html

Great Book I Just Read
The War of the Worlds by H.G. Wells
I admit it’s hardly Christmas fare, but this is a classic I have always wanted to read. And it was worth the wait. It's the first book I have read on my new Kindle, and it was free!

This is a gripping and exciting story about the attempted overthrow of earth by Martians, written by the master of science fiction, in 1898. Given that it was written over 100 years ago, it’s astounding how Wells acutely and instinctively hones in on what happens when there is anarchy: What happens when a country, the most powerful on earth, is invaded? Who are the survivors? How would people behave? Wells’ story is broad: he delves into the science of microorganisms, astounding as even the germ theory had only just in the past 20 years been accepted, but even in 1889 Halsted, a leading US physician, didn’t believe they traveled by air! For Wells to apply that to a tale about invading Martians is sheer brilliance. It was also the industrial age and so machinery figures prominently, as the Martians clank their way through the countryside, destroying everything with their “Heat-Ray.” He explores Darwinian theory: why do the Martians have huge heads, no intestines or internal digestive organs, and why are their machines tripods that slither? He provides sound and fascinating explanations, while at the same time creating a page-turner story that will be hard to put down. He describes the breakdown of society at the hands of monsters who seek to exterminate a race, and this was before the World Wars. Wells was a genius, and a prophet. Read this before seeing either of the movies, both of which were good for different reasons. Four stars.

Monday, December 20, 2010

Merry Christmas!


Wishing all our readers, sponsors and beneficiaries wonderful holidays!

Monday, December 13, 2010

Holiday Time in New York City


I was very 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. (Photo: Shari and Laurie)

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!)

Sunday, December 05, 2010

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! My own son Tommy couldn't attend as he lives too far away, but he'll be getting a DVD of the movie in his stocking and we will watch it over the holidays. Tara however did attend with me. 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! (Laurie and Marion [in red])


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.

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. (Photo: Laurie, Jessica Swann of Biogen Idec, Mary Lou Murphy)

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.
 
Bayer