Blog Archive

Sunday, March 29, 2009

Celebrating Elton's Surgery, American-Style

I'm back from a wonderful trip to Chicago, to celebrate Elton's recovery from surgery with many of the people who helped make it happen. On Wednesday night we all met at Maggiano's in Chicago. I had not seen Elton since December 2007, when I was in his home, and saw the enormous knee that was causing his leg to go numb. To see him sitting in a fancy restaurant in Chicago! Amazing!






Also present was the entire Castaldo clan, who are hosting Elton's visit: Angela and Chris Castaldo; Luke, who has hemophilia; Philip; and Simeon. I have met Luke and Philip before but not Simeon, who is as every bit as handsome and well behaved as his brothers. Dr. Len Valentino not only came but hosted the entire evening. Audrey Taylor, nurse at RUSH University joined us, and Kimberly, the admin for the HTC. Also the lovely Nancy, his physical therapist, who I think has the hardest job in the world. And best of all, Neil Herson, Elton's sponsor through our nonprofit Save One Life. Neil had provided Elton's airfare and this evening, showered him with presents: a new soccer ball, sports clothes, new sports sneakers, a laptop! (You should have seen Elton's eyes) Elton was already looking pretty hip with his new iPod (a gift from Dr. V) but now he was really GQ quality! Accompanying Neil was Stephanie Miller, director of marketing at ASD Healthcare, where Neil is president.

Elton has a dazzling smile and gentle demeanor that charms everyone he meets. He was so grateful for all the attention and gifts. He is now walking on crutches, feeling better and working hard at his PT.

Thanks to everyone who supported Elton, who sent money, who sent gifts. Thanks to Wyeth for the great donation of factor IX. We've been able to extend Elton's visit two more weeks, to give him more time to do PT and heal. Please continue to read all about Elton at http://www.chris-tocentric.com and leave Elton a message there! He will get it, I promise!

Elton--18 years old, traveling half way across the world, never having been on a plane before, or even out of your town, trusting total strangers-- you are an inspiration and a courageous young man!








Great Book I Just Re-Read
How to Win Friends and Influence People by Dale Carnegie

This is the beginning of all people skills, self improvement books, first published in 1937, and still relevant and vital. It's a basic "how to" manage people and develop the self to be better at motivating others, getting along with others and making a difference. Very easy to read, and chock full of real life examples, from history and also just every day people, Carnegie is entertaining, motivating and stresses kindness over efficiency. His principles are truths and you can really see a difference in your relationships if you start to use them, Incidentally, I applied these in raising my children, and they work beautifully to raise respectful and polite children. You can read this in one night probably, but its impact will last a lifetime. Four stars; a classic.

Sunday, March 22, 2009

Wanted: A Few Good Inhibitor Patients

I just returned from Miami, where I attended the first 2009 Consumer Advisory Council with Novo Nordisk. This is our fourth year, and it just keeps getting better! I spent all day Thursday, from 8 am till 4 pm, with about 12 inhibitor patients and family members, along with representatives from Novo Nordisk. The Consumer Advisory Council covers topics of direct interest to inhibitor patients and family members, and offers them a chance to give feedback directly to Novo Nordisk. The Council meetings allow Novo Nordisk to share product and treatment information, solicit suggestions and brainstorm together on meeting the needs of the inhibitor community.

It's vital for consumers to have a direct line to the manufacturers; in this way they are able to express their concerns, needs and hopes. And it's more than just lip-service. What has been presented in the past through the Consumer Council has become a reality in some programs and educational brochures for patients.

For instance, the Uninhibited Achievement Awards (UAA) were created through the Consumer Council and honor individuals in the inhibitor community. In addition to an award, a donation is made to the winner's favorite charity.

So, we are looking for a few good inhibitor patients!

By August we want to nominate a patient with an inhibitor who meets the criteria of the UAA awards. Know someone with an inhibitor who is courageous, hard working, and achievement-oriented despite so many medical obstacles? Go to http://www.changingpossibilities-us.com/changing/index.asp and fill out an application! It's easy, and will be well deserved.

Also, in 2010 we will need new members for the Consumer Advisory Council. If you know someone who might be interested in participating, call me (978-352-7657) and let us know. Council members must be a person with an active inhibitor or their caretaker (parent). It's a chance to travel, work as a team, consult with a pharmaceutical company, and get your voice heard.


Good Book I Just Read
The Greatest Salesman in the World by Og Mandino

This little gem is considered a classic in the field of motivation and business. First published in 1964, it may read a little dated but its principles are timeless. The entire book is a parable, and the business principles of selling are presented as ancient, secret scrolls. Hafid is a wealthy, elderly man, living in Damascus, Syria, at the time of Christ. He is known as the greatest salesman in the world. As he nears death, he decides to liquidate everything he owns--millions. He has Erasmus, his faithful servant, sell off everything except for some money to see him through to his death. But he shares with him a secret, which he says is worth more than the jewels, money, millions he has made. Ancient scrolls, passed on to him from the previous greatest salesman, have been waiting to be revealed to the next greatest salesman. Hafid shares the scrolls with Erasmus, warning him they must give these ancient scrolls only to someone exceptional, someone seeking to be the greatest salesman in the world, even if he did not at first know it. How would they know who it is? Some sign would alert them.

At only 100 pages, this little book can be read in a few hours, and is packed with wisdom (even though I found the writing to be a bit stilted and inconsistent, as Mandino tries to write in a "verily" and "this is howeth they used to speaketh" kind of way). The book has distinct Christian overtones, which may be off-putting to non-Christians. The wisdom in the scrolls, and how Mandino (or Hafiz) says to use them, is excellent, and I can attest, as do so many others, they do work. Three stars.

Sunday, March 15, 2009

Hatching a New Factor Therapy

Here's a new post I read in the news wires: biotech start-up company Genavia Therapeutics wants to produce a blood clotting protein from chicken eggs.

Just when you think you've heard everything.

You may have read in my newsletter PEN about pigs that may be able to express factor through their milk glands. These are called transgenic animals. Another company here in Massachusetts wants to do this with goats.

Well, Genavia will do it with chicken eggs. It plans to use technology developed by Californian company Origen Therapeutics to produce human factor VIII. The technology involves injecting a human gene into chickens and extracting the protein from the whites of their eggs. Omelets, anyone?

Genavia chief operating officer Peter Bradley has said that this "avian transgenic technology" could cut the cost of treatment to as little as 20% of the current price. "We plan to not only take market share from the current players but to actually grow the market," Bradley said as reported in the Waikato Times.* Now that would be something to crow about.

Stay tuned as we watch developments in this research and production; we hope to provide more information as it becomes available.

*"Start-up gets boost" by ANDREW JANES - Waikato Times, 10/03/2009

Great Book I Just Read
Beautiful Boy by David Sheff.
Heartbreaking, gutsy, honest, scary and hopeful, Sheff recounts the harrowing and bleak downward spiral of his "beautiful boy," his teen son Nic, into a nightmarish world of drugs and addiction. This was a child who seemed to have it all: intelligence, charm, opportunities, and two caring parents. Sheff's account is a damning testament to the devastating threat of meth to our youth, the lure drugs have to teen boys, the helplessness and anguish of families, and the sliver of hope that some teens can survive addiction. My dear friend Kerry Fatula recommended I read this and I want to pass this along: ALL parents of teens and preteens MUST read this book. Teens should read it too; it shoud be required reading in all grades. All of us can see ourselves on its pages: the denial ("My son wouldn't..."), the suspicion ("Could he possibly...") and the blame ("Where did we go wrong?"). Sheff's skilled storytelling allows all parents to journey with him through hell and back. THIS IS A MUST READ. It's the best book you will read all year, and the most important. Four stars.

Sunday, March 08, 2009

March is Hemophilia Awareness Month


March is a wonderful time for promoting and educating the public about hemophilia--it's our official month! NHF just had Washington Days, which I, yet again, could not attend! I heard it was great; at least my friends all went and had fun without me.

While googling March and hemophilia, I came across this great PSA by Newt Gingrich and sponsored by Factor Foundation of America, the nonprofit founded by my friend Dave Madeiros, who passed away five years ago, Feb. 29. Dave was a visionary, light-years ahead of his time. How different things would be if he were with us today. View this--still relevant even now.

http://noolmusic.com/google_videos/newt_gingrich_and_hemophilia_awareness_month.php

It's a great month because our boy from Zimbabwe, Elton, had surgery on Friday in Chicago and is doing great! See photos of this child from an impoverished home, who has lost his father, 29-year-old brother to TB, and 25-year-old sister from meningitis just this past year, and who suffers from the devastating effects from untreated bleeds. He is doing great and is going to be fine. I am flying out to see him on the 25th, days before he is scheduled to go back home. There will be a lot of tears then, as everyone has fallen in love with this gracious and gentle young man.

And it's a great month because a little 8-year-old orphan with hemophilia A in China, who is without home, parents and treatment, is having a lot of people inquire about adopting him! I have great faith he will find a home with a wonderful American hemophilia family. I am not allowed to show his photo, but he is adorable. Thin, wiry and mischevious, just as a boy should be.

Please share your activities for Hemophilia Month and please go to the blog about Elton and leave a comment! I am sure Elton would love to hear from you as an American!

http://www.chris-tocentric.com

Sunday, March 01, 2009

Love: From A (America) to Z (Zimbabwe)

If you read about my travels to Zimbabwe in December 2007, you'll remember I went to the home of Elton Sare, a 17-year-old with hemophilia who was suffering from a grotesquely swollen right knee. I met Elton's entire family, including brother Emmanuel, age 11, who also has hemophilia. Elton lives in poverty: his father died ten years ago. His mother earns only about $27 US a month selling vegetables. His older brother Sylvester was sick with tuberculosis, quarantined in the kitchen, sleeping on the cold, hard floor.

Elton haunted me for months, and I tried to find help for him--a hospital that might offer free care. I had just about given up, until I met UN Goodwill Ambassador Juliet Hanlon, who persuaded me to keep trying, day after day. Juliet gave me renewed faith and hope. I started asking again.

When I mentioned Elton's case to Dr. Len Valentino (chief of Pediatric Hematology and Director of the Rush Hemophilia & Thrombophilia Center at RUSH Hospital University Medical Center in Chicago) at the NHF annual meeting in November, he told me he might be able to help. Just get Elton here and we would appeal to the generosity of the RUSH community to help.

What's happened since then is nothing short of a miracle. Elton is here now, in Chicago. He just arrived Saturday morning, after 30 hours in transit, traveling alone, with three plane changes. The gracious staff at South Africa Airways ensured he arrived safely. What courage Elton has!

You cannot imagine the challenges to get him here. When Dr. Valentino offered the surgery, Providence, as they say, started moving. We found a donor for plane tickets--Neil Herson, president of ASD Healthcare. Wyeth agreed to provide BeneFIX for the surgery. My dear friends Chris and Angela Castaldo, who have a young son with hemophilia (and two others!) opened their home to Elton for a month. A volunteer from Zimbabwe living in Chiacgo, Emma, helped meet him at the airport, to make him feel more at home. Even the UN got involved when it looked like Elton's visa might be denied. A collection was taken through Save One Life to raise money for the passport, visa and traveling expenses--$2,900 raised in two days!

Elton comes from a country that is collapsing: there is 80% unemployment, over one million percent inflation, the world's highest. And a raging cholera epidemic that has killed over 3,700. Food and gas are in short supply. Elton went shopping today at a mall: his eyes wide, he was overwhelmed seeing all the stores, the sites, the sounds. But not so overwhelmed that he didn't know what to say when asked if he wanted a CD: "Usher."

I learned through Chris that Elton's brother Sylvester died of TB last summer. And his older sister died just in September of meningitis. Loss is common in countries like Zimbabwe. I wonder how his mother ever found the courage to let her 18-year-old son board a plane and fly half way around the world to be with strangers in a strange country.

But Elton is adjusting as only a teen can. He loves the cold weather, enjoys movies on the TV, and is warming to his host family. It must be so strange. He had his first infusion tonight for a bleed in his right elbow. Tomorrow (Monday) he has an array of tests at RUSH, and on Thursday, he gets his operation for his synovitis. We'll keep you posted on how he is doing. You can also read Chris's website: http://www.chris-tocentric.com for a first-hand report.

Thanks to everyone who is helping Elton! Please consider making a contribution, so that we can buy Elton new clothes, a suitcase, some CDs, and art supplies (he loves to paint in watercolor!). We want to stock him up before he heads back March 28 to Zimbabwe, where these things are not available, and where life is the greatest gift.

Go to www.SaveOneLife.net and click "Donate." It's that easy, and will mean so much to Elton.

(Photos: Elton's knee, Dec. 2007; Elton and Emma at Chicago O'Hare airport on arrival; Chris Castaldo, Elton, Dr. Valentino)
 
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