HemaBlog™

New Therapies, New Era

I attended the New England Hemophilia Association’s Consumer Medical Symposium Saturday in Portland, Maine. It was fabulous! Over 200 consumers, medical staff and guest speakers attended. As always, after 31 years in this community, it’s like a family reunion. But it’s also a time of great learning. We were fortunate to have Dr. Steven Pipe,

Read More »

Honoring a Little Boy and a Great Man

Last week, I traveled to California, for an exclusive showing of the wonderful movie “Bombardier Blood” to employees of NuFactor, the hemophilia distribution program of FFF Enterprises. We gathered at the Omni Resort in Carlsbad, where Chris Bombardier and I marveled at the brilliant blue skies, warm sunshine and swaying palm trees. The movie was

Read More »

Gene Therapy: Who Makes the Decision?

by Derek L. Markley It has been more than eight years since St. Jude Children’s Research Hospital, University College London, and the Royal Free Hospital began a clinical trial using gene therapy to treat people with hemophilia B. That same year, our family welcomed a new baby, Bubba, who has severe hemophilia B. We had

Read More »

The Day of Living Dangerously: Haiti

The rocks in the water don’t know how the rocks in the sun feel.—Haitian proverb Haiti is the poorest country in the Western hemisphere, and even during good times is never easy to visit or work in. A government that seems perpetually corrupt, combined with natural disasters (most notably the earthquake of 2010), difficult topography,

Read More »

Haiti: Little by Little

Piti, piti, wazo fe nich li. Little by little the bird builds its nest —Haitian saying. I’ve either done a very poor job or a very good job trying to get hemophilia care to Haiti. I started in 2001, solo, trying to figure out the puzzle that is Haiti. It dawned on me in 1996,

Read More »

The Day the Music Cried

Today is the 60th anniversary of what was dubbed “The Day the Music Died,” by singer Don McClean in the song “American Pie.” The day that singer Buddy Holly, Ritchie Valens and The Big Bopper died in a plane crash in an Iowa cornfield at 1 am on a frigid morning, after performing at the

Read More »
ADVERTISEMENT
Archives
Categories
ADVERTISEMENT