New York City Hemophilia Chapter

Charitable Thoughts

It’s a new year, and a time of resolutions. How about a resolution to be more charitable? So many I know think of donating time and not money, when for most organizations, nonprofits and the people they serve, money helps the most.

This story sure caught my eye:

In July, Violet and Allen Large of Lower Truro, Nova Scotia, won more than $11 million in a lottery. They have since spent every last penny—none on themselves. “What you’ve never had, you never miss,” said Violet, 78. The couple donated the money to a list of causes that included the local fire department, hospitals, and organizations that fight cancer, Alzheimer’s, and diabetes. Violet has been undergoing cancer treatments, which has underscored for the couple the limits of wealth. “The money that we won was nothing,” said Allen, 75. “We have each other.” The Week

There are so many causes in hemophilia worthy of a donation: your local chapter, a family in need (yes, we do have many families with hemophilia suffering here in the US). Make a donation in memory of a loved one or in honor of someone you admire to the World Federation of Hemophilia or the National Hemophilia Foundation. I was recently touched when I learned that the New York City Hemophilia Chapter made a donation to the Victory for Women campaign in my honor!

You can also sponsor a child with hemophilia in a developing country through Save One Life. Despite some tough economic times here, we still live like kings compared to an average day in their lives. Visit to see some gorgeous children in need.

And remember the great words of Winston Churchill: We make a living by what we get, we make a life by what we give. Let’s make 2011 a year of giving.

Great Book I Just Read
Deliverance by James Dickey
I had to read this after writer Pat Conroy noted it as one of his top five favorite books. I had seen the excellent movie, which contains one of those lines that has gone down in movie history. The book, my second on a Kindle, is excellent, too. Terse, exciting, horrifying, it pits man against the elements, man against society and man against himself. Everything balanced becomes unbalanced as four city slickers take a canoe for a weekend down the last great river of Missouri before it gets dammed. They encounter much more than they ever thought, leading to questions of justice, revenge, poverty, retribution, evil and survival. Three stars.

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 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!)

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