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Save One Life’s Gala: Honoring the Massies

Laurie Kelley May 21, 2012

Save One Life honored the Massie family Thursday night at its second annual gala. About 150 guests arrived at the Commons, in Topsfield, Massachusetts under sunny skies to enjoy cocktails, dinner, business networking and to honor the people who have helped make Save One Life so special.
Nelson Escoto, president of Bleeding Disorder Resource Network, received Sponsor of the Year award, for supporting a sponsorship for each new patient he receives on his service. The lobby wall at his office is covered with photos of their beneficiaries. Before the night was over, Nelson would sponsor 5 more children with hemophilia!

The elegant dining room
Laurie Kelley as host
Guests enjoy the good New England weather
The Massie family
Bob Massie accepts his award

Adriana Henderson, founder of STAR Children Relief, won an award for Program Partner of the Year for her work in Romania, where Save One Life has many beneficiaries. Her photos of the children brought tears to the eyes of many in the audience. Laurie Kelley made a special plea to the audience to help raise an additional $2,500 to meet the cost of camp this year, only a few weeks away. By evening’s end, all the funds were raised. Sasha Zatyrka, director of the Colburn-Keenan Foundation, presented Adriana with a $1,000 check.
The highlight of the evening was duo awards presented to mother-son team of Suzanne and Bob Massie. Bob Massie was given an Inspiration Award first, for his life of public service, particularly in representing hemophilia to the public. Bob’s newest book, A Song in the Night, a Memoir of Resilience, was just released and Doubleday Books generously donated copies for each guest. Bob, a gifted orator, share a story about his childhood to highlight how his mother Suzanne kept his faith and hope alive that he would be okay despite his hemophilia. Bob has a long list of accomplishments that would exhaust an average person, let alone one with multiple chronic illnesses and frequent setbacks. He most recently ran for US Senate, and now is president of a nonprofit.

Attendees enjoy dinner
Nelson Escoto, president of BDRN, accepting his award as Sponsor of the Year
Sasha Zatyrka presents a $1,000 check from the ColburnKeenan Foundation for the Romanian Camp Ray of Hope
Adriana Henderson accepts her award
Bob and Suzanne Massie autograph their books
Suzanne Massie is co-author of Journey, the first book about hemophilia in America, which poignantly details life with a child with hemophilia in the 1960s. She became an expert on Russia after helping research and write Nicholas and Alexandra. She went on to author several books about Russia, still in print today. She created the Firebird Foundation to help youths with hemophilia in St. Petersburg, Russia, and as Laurie pointed out, was the inspiration for Save One Life. When Laurie worked with Suzanne on the Firebird Foundation, she saw first-hand what one woman could do to change the lives of so many in need. Suzanne has a new book in the works, about her years advising president Ronald Regan on Russia as the end of the Cold War was coming.
In a warm and gracious speech, this elegant lady still showed the passion which drove her to accomplish so much and change the lives of so many. The audience was mesmerized and gave her a standing ovation at its end. It was a great privilege to have the ever-active Massies with Save One Life for the evening, and to present such well-deserved awards. The evening ended with book signings, and the silent auction, and many, many happy memories
Laurie presents the Inspiration Award to Suzanne Massie, author, humanitarian, presidential advisor
and pioneer in hemophilia

A Mother’s Journey

Laurie Kelley May 14, 2012
Today is Mother’s Day, a special day for mothers of children with chronic disorders, like hemophilia. The sacrifices and suffering they endure creates women of strength and compassion, and they deserve to be celebrated. Me? I was treated to “The Avengers” by my three children, with an extra large popcorn and soda. Perfect way to celebrate!

And a perfect book to read this week is Journey, by Robert K. and Suzanne Massie, first published in 1973. The intimate story of a young couple facing the diagnosis of hemophilia in their infant son, Journey has become a classic in hemophilia. It is, arguably, the first book written about hemophilia. It slowly unveiled the suffering and disruption hemophilia causes, and what life with hemophilia was like before the advent of clotting factor. The story is written in alternating chapters by Robert and then Suzanne. They each have distinctive styles. Robert shares the history of hemophilia, the genetics, the science behind it and the treatment. He also delves into the blood banking industry, and the shocking policies and politics of blood. Suzanne shares the family’s story, day to day, and the exquisite pain a mother experiences while watching her son suffer through the night.

But these are not ordinary parents. Robert K. Massie is a Pulitzer prize winning author, and having a son with hemophilia and being a writer at Newsweek, led him to research and eventually write Nicolas and Alexandra, the captivating masterpiece about the last Tsar of Russia, whose son also had hemophilia. It reads at once like a great historical novel, highlighting the tragic love story between the two royals, and postulates how hemophilia might have contributed to the downfall of the empire and the take-over by the Bolsheviks. Suzanne helped research and edit the book extensively, and in time, became an expert on Russian culture and history. The family gained notoriety when the book was published and then made into a Hollywood movie.

The story concludes when their son Bobby is 18. Later editions included an update: Bobby survived, contracted HIV and hepatitis C, attended Ivy Leagues colleges and became an Episcopalian minister. He also became a social activist (most notably against South Africa’s apartheid system) and a politician, running for Lieutenant Governor of Massachusetts, and later, the US Senate. He has dedicated his life to public service and has accomplished so much.
Suzanne, his mother, became an author in her own right, on Russia, and later became President Ronald Regan’s advisor on Russia during the Cold War! She could never have seen where her journey as a young mother of a child with hemophilia could have taken her.
As mothers of children with hemophilia, we know the limitations our sons can sometimes face. Reading Journey makes you appreciate what is possible, how much we as women can endure as mothers, and gives hope that despite the suffering, crippling, hospitalizations, pain and days or weeks lost from school or work, all things are possible. Suzanne is an extraordinary mother who raised an extraordinary son. 
I am very proud to say that we will be honoring this mother and her son at our second annual spring gala for Save One Life this Thursday in Topsfield, Massachusetts. This is another story to add to their journey. Suzanne is now 81, lives in Maine, and is still writing! Bob has just published his memories (which I will review in a future blog) and Suzanne hopes to publish her story on being Regan’s advisor.  It is an honor to know this mother and to celebrate her life and accomplishments on Thursday.
Happy Mother’s Day to all those with children with hemophilia!
You can order used copies of Journey through Amazon.com; the book is out of print and new copies are not available.

Gap? Try Chasm

Laurie Kelley May 7, 2012
When you prepare to hop on or jump off the “tube” in London, the underground train’s speaker system says in a very sexy voice (aren’t all British accents so), “Mind the gap.” The gap is that space in-between the platform and the train, so yes, you’d better mind the gap or else. Stuck in there and you could lose your leg or life.

Closing the gap was the theme of this year’s World Hemophilia Day, celebrated April 17 all over the world. Mostly it’s a way to unify our diverse and dispersed community, and also to raise public awareness. My favorite activity this day to date was last year, when Romanians turned the major fountain in Bucharest red with food dye, representing blood. And all over the world you see posters of kids with swollen joints, and things like that.

Here’s my poster representing the gap: real life Kirby, age 10, from the Philippines. This poor child languished in a hospital bed in a far off province, with gangrene in his leg just two years ago. Doctors didn’t even know he had hemophilia. Only when he was accidentally discovered by Andrea, one of our colleagues there, did anyone suspect he had hemophilia. Project SHARE sent factor VIII and he had his leg amputated. And that’s the good news.

He looked healthier post-op, and he survived. He was enrolled in the hemophilia society. But yesterday I received an urgent request from his doctor: Kirby’s leg is infected again. Send more product, 100,000 IU so we can amputate. Again.

Kirby, or rather his leg, is stuck in the gap. No products available in the Philippines. Hard to imagine: we had a military base there. People speak English there. The Philippines has been our ally for decades, a springboard that buffered us from military threats from the east. But they have never qualified for our medical care.

And the Philippine hemophilia communities are not yet lobbying their government for their right to get factor. What will it take? Boys with hemophilia are dying every month in the Philippines. How many boys must die before they realize they’ve got a huge problem and are willing to do something consistently about it?

And we don’t have 100,000 IU. Where are we going to get 100,000 IU from?

The gap at this point looks like a chasm. Kirby could very well die without the factor to amputate again. Andrea wrote to me tonight in fact, and told me about an upcoming meeting this month that will put the issue on the table. Enough is enough: you can only close the gap when patients come together, decide they have a right to factor, and then present this to the government, and keep on pressing it.

Russia did it. Brazil did it. India did it. Even little (and poor) Honduras did it. The Philippines can do it too, if they want to.

But it may not be in time for Kirby. When I think of Kirby’s case, I don’t think of closing the gap, it’s more like Touching the Void, a chasm cut into a mountain that divides the haves from the have-nots. And even if we donate all 100,000 IU by some miracle, there are more Kirby’s. There are only three ways to close the gap: lobby, lobby, and lobby.

(Anyone with any factor VIII that is unwanted or unused for medical reasons, please ship to us ASAP)

Great Book I Just Read

The Time Machine by H.G. Wells (Kindle)
This science fiction classic is timeless, no pun intended, and available for free on Kindle. Wells indeed is the father of Science Fiction, and created the genre with this, his first novel. A Victorian man, only referred to as the Time Traveler, invites his scientific and literary colleagues to dinner at his home, but arrives himself late and disheveled. He shares his bizarre and fabulous story: he has built a machine that allows time travel. He went into the future, the year 802701, to what he first thinks is Utopia–no one worries, no one works, everything is shared, people seem at peace. But not so: mankind, rather than reaping all the benefits of accumulated scientific knowledge, has become two races, the Eloi, gentle, child-like simpletons that have no culture, reading or seeming purpose, and the Morlocks, hairy, snarling, subterranean ape-like creatures that actually work machinery and harvest and cannibalize the Eloi. Wells, through carefully crafted and beautifully scripted prose, weaves an amazing story about mankind’s future, and the perils of advanced civilizations and communism. Wells’ sci-fi is a vehicle for his critique on social systems. A fantastic book by a literary genius. Five/five stars.

Gene Therapy: Lookin’ Good!

Laurie Kelley April 30, 2012
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.

Un día para recordar

Laurie Kelley April 23, 2012
Blue skies, great food, pulsating music, and surrounded by wonderful people with hemophilia. A day to remember in Puerto Rico.


Puerto Rico—the shining star of the Caribbean. Remember those commercials from the 1980s? Puerto Rico is proud of its status as a Commonwealth of the United States of America; its inhabitants have been US citizens since 1917. How many of use reading this realize that Puerto Ricans are American?

This was part of my quest this week. To return to an island and people I love, to see how hemophilia care has evolved since 1998, when I first visited, and to see how hemophilia care differs from that of the States, especially in light of the Affordable Care Act.

I arrived Thursday afternoon and spent the evening with Osvaldo, a young man with hemophilia, and his girlfriend. We all had dinner together and listened to him share his story of having hemophilia, an inhibitor and limited access to product. Charming and intelligent, Osvaldo has suffered but also persevered: he is college educated and owns his own company!

On Friday I met with the HTC staff at the Centro Medical to get an update on hemophilia treatment. There are an estimated 250 persons with hemophilia on the island… but no one really knows. Like the States, there isn’t yet a national database. The facilities are good and the staff very inquisitive and kind.

On Saturday, Johnny and Tammy Marquez, the husband and wife team who head up the Association Puertoriqueña de Hemofilia (APH), and I traveled about the island to meet a few hemophilia families. We traveled two hours to Salinas to meet one family and another half hour to meet one more in Santa Isabel. Wonderful families; fascinating insights on PR hemophilia care!


We ended our day today by attending the annual meeting of the APH. It was packed, and we had a full agenda with a speaker on dental care, chiropractic care and later an open forum which became quite lively with a debate over whether hemophilia care in Centro
Medico was up to standards. The day ended with a great motivational speaker, lots of hugs, and good feelings all around. People with hemophilia have community, muy fuerte.


So what did I make out of all this? You’ll just have to wait… until August when we publish a full report in our article on Puerto Rico in PEN. Sign up now to receive it. And in the meantime, visit https://www.blog.kelleycom.com/2011/01/la-vida-hemofilia-visit-to-puerto-rico.html to read about our visit last year.

Good Book I Just Read
A Dog’s Purpose by W. Bruce Cameron


Maudlin, unabashedly sentimental, charming, simplistic, sugary sweet… I was at first wondering where this book was going, but then got sucked in by the sentiments, and was in a puddle of tears by the end. This book describes a dog’s life (lives, actually) as told through a dog’s eyes. The main character lives through four lives, reincarnated after each demise as a puppy, aware that he is reincarnated and wondering in each life: what is going on? What am I supposed to be and be doing? When does this end? It makes the reader wonder too, as the book is a bit disjointed at first and it may take a bit to figure out Cameron’s style. If you are a dog lover like me, you will enjoy much of the free association by the dog, especially whenever a cat appears; very clever and funny. The dog is feral in his first life, trying to survive and eventually is euthanized; reincarnated, he comes back as a lab, and his real story begins in earnest when he becomes bonded to a boy. No spoilers here, but the dog becomes smarter and more self-aware, and as a reader you share the dog’s unswerving loyalty to humans and his unending desire to serve and please, despite humans’ baffling behavior. By the end of the book you yearn for your own current dog to hug, or recall your childhood dog with such strong emotions, I can only think of Toy Story 3 as something in comparison. To fairly critique (as a professional editor) you must disregard or overlook the inconsistencies: the dog understands peeing, vomiting, crying but doesn’t have a word for his own natural instinct to mate? The dog refers to chopper, car, truck, cage, various power tools, collar, leash, swing… but when his boy’s mother removes her ring and throws it into the pond he doesn’t know what that little round thing is called? The dog conveniently doesn’t know names of things whenever it’s a Kodak moment. But just keep reading and don’t be critical and you will enjoy it. I hate being manipulated by purple prose but this was overall a wonderful book, because I have loved all my dogs and currently inherited a puppy I’ve only been complaining about. No more. I’ll love him with all my heart too. Three/five stars.

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