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Did yet another week just zip by? I’ll be home before I know it!  I had the pleasure of meeting John Crowley at a tailgate party at Dr Byrne’s house this weekend. As you will see below, John Crowley is a hugely successful man, but when you talk to him, he is first and foremost a Dad with a huge love for his family. As I said, it was truly a pleasure to meet such an inspirational person. John has 2 children with infantile pompe and an older son, John Jr, who does not have pompe. In 1998, two of the Crowley's children, Megan and Patrick, were diagnosed with a severe neuromuscular disorder, Pompe disease. In the face of the children's deteriorating health, the family moved to New Jersey to be close to doctors specializing in the disease. Frustrated with the slow pace of research on Pompe disease, Crowley took a position as CEO of Novazyme Pharmaceuticals, a biotechnology research company located in Oklahoma City that was conducting research on a new experimental treatment for the disease. In 2001, Novazyme was acquired by Genzyme Corporation, then the world's third largest biotechnology company, under Crowley's initiative. Crowley was in charge of Genzyme’s global Pompe program from September 2001 until December 2002. Genzyme’s work eventually bore fruit and in January 2003, Megan and Patrick Crowley received the enzyme replacement therapy for Pompe disease developed by Genzyme. John Crowley credits the experimental trial with saving his children's lives. The acquisition of Novazyme by Genzyme, and Crowley's fight to cure Pompe's Disease, was documented in the Harvard Business School Case Study, Novazyme: A Father's Love. Crowley went on to become President and CEO of Orexigen Therapeutics in 2003. In January 2005, he was named the President and CEO of Amicus Therapeutics, based in Cranbury, New Jersey. He also serves in the United States Navy Reserve as an intelligence officer. He completed a six-month tour of active duty at the Center for Naval Intelligence in Virginia in 2007. He is currently assigned to a Navy Reserve unit at the United States Special Operations Command. Crowley was profiled in The Wall Street Journal by Pulitzer Prize-winning journalist Geeta Anand. Anand expanded the profile of Crowley into a book published in 2006, The Cure: How a Father Raised $100 Million – And Bucked the Medical Establishment – In a Quest to Save His Children. Harrison Ford and Double Feature films optioned the rights to produce a film inspired by Anand’s book and the Crowley family. In April 2009, CBS Films began filming this major motion picture about the Crowley family's quest to save their children's lives. The film, titled Extraordinary Measures was released nationwide on January 22, 2010. Extraordinary Measures stars Brendan Fraser as John Crowley and Keri Russell as Aileen Crowley, and also executive producer Harrison Ford as "Dr. Robert Stonehill" who is a composite character based primarily on Dr. William Canfield and inspired as well by other doctors Crowley worked with. John Crowley has also written a personal memoir entitled Chasing Miracles: The Crowley Family Journey of Strength, Hope and Joy. For more about this inspirational family see link below: http://www.crowleyfamily5.com/index.htm  Before we went to Dr Byrne's place I also went to another tailgate party at Katie and Dean’s sectioned off bit of roadside. Great food, lovely people, some I have met before and some new ones. It’s always interesting to meet new people and find out about where they come from and what they do. Most of them who have heard of New Zealand have heard about how many different terrains there are all in one small country, and the wonderful outdoor lifestyle we have there. I’ve invited them all over. If they all come at the same time our house is going to be PACKED! I had to include this photo of me with this man, because he is 6’8”! That’s his wee daughter there pulling my hair lol. I guess since I’m talking tailgate parties, I should mention the score in the big game following. Gators vs Alabama…The Gators got chomped, #3-ranked Alabama beat #12-ranked Florida 38-10 in The Swamp. At least the tailgate was great!  I took the OZs car for a drive this week. It’s funny how you feel like you have this huge flashing neon sign on your forehead saying “look at me, i'm an idiot, I have no idea what I’m doing”! But, I took deep breaths, stayed on the correct (right…wait… yep the right hand side) side of the road and didn’t crash. I didn’t go out on to the bigger main roads as they are a little scary. But I will work my way up to that.  This week I went to the pet shop and they had an adoption day. Lots of dogs, mainly large ones, plenty of cats and kittens. I just wanted to bring all of the cats and kittens home… Note to my husband: NO I didn’t! I saw a great sign on the cages of the black cats which read: 10 Reasons to adopt a black cat 10 You’ll save $$$ on their Halloween costumes 9 You can always find them in the snow 8 Holding a black cat is very slimming 7 Black cats will match any décor 6 A lint brush isn’t required for a black tie affair 5 When you love a black cat, luck is on your side 4 Black cats are like Onyx, a beautiful gem 3 Hey they don’t care what colour you are! 2 Love knows no colour And the number 1 reason for adopting a black cat is… ...they are the least likely to be adopted. I couldn’t resist putting this in because I think black cats are awesome. Two of our cats are black, one which we adopted from the local SPCA. Frances is one of the best cats you could ever hope to have. So if you’re thinking of adopting a cat, try a black one!  Critter of the week The Great Egret I saw this bird down the road as I was scootering past. At first I just noticed its head as he was in behind the low hedge I always go past. He was sauntering along picking lizards out of the hedge and wasn’t worried one bit when I stopped to take photos. When I went around to the other side of the hedge to photograph him he just carried on with his lizard hunting. Felt kinda sorry for those cute little lizards though… I had to do a little homework on this one. When I saw this bird I thought it was a White Heron. But when I googled that it wasn’t quite right. It is similar to a white heron, but the egret has black legs, a thinner, bright orange-yellow bill and no head plumes. The Great Egret is found across much of the world, from southern Canada southward to Argentina, and in Europe, Africa, Asia, and Australia. It's the largest egret in the Old World, and thus has garnered the name Great White Egret. In the New World, however, the white form of the Great Blue Heron is larger. In the United States, the Great Egret used to be called the American Egret but that was hardly appropriate, since its range extends beyond the Americas and indeed farther than other herons.  This Monday I have my 4th infusion, preceeded by a morning of tests for lung function, muscle strength, 6 minute walk test and belly dancing whilst standing on a beam like the gymnasts use…I’m kidding about that last bit!
Monday night my friend Brad from Canada, who also has Pompe, will be arriving. Fortunately the All Blacks caned Canada in the game yesterday so I have a bit of ammo up my sleeve if need be! Sorry about the Warriors, maybe next year! Awesome that they got there though! Anyway as I said, Brad from Canada (I have to differentiate because the OZ is named Brad as well) is arriving Monday to hang out here for a few days until we go to Texas on Thursday. I've been very fortunate to be funded by the International Pompe Association (IPA) and the Acid Maltase Deficiency Assocation (AMDA) to attend a Pompe conference representing New Zealand next weekend. Our New Zealand Pompe Network is now a fully paid up affilliate member of the IPA. So I will have lots of info in next week's blog about our Texas adventures. Would it be too "cliche" to buy a 10 gallon hat in Texas?? Until next week from Texas...Keep well, keep safe, treat each other with love and kindness...and get yourself a black cat :o)
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AuthorAllyson Lock. Archives
February 2012
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