Get Tim to St Louis
Help Tim to meet some people with a rare disease just like his, at a conference in St Louis in July. It's a once in a lifetime opportunity.
Wellington
Tim would like to go with his dad, John, who is one of the main organisers of the ISMRD meeting on Glycoprotein storage diseases. That's because until now he has met only 2 other people with the same condition, Alpha-Mannosidosis, his twin sister Hollie and one younger boy from Auckland. There is also a plan being worked on so that after the meeting Tim might get to attend a research clinic in Maryland to provide information about the natural progression of this disease. The information will help the researchers as they try to develop gene therapy for A-Mann. In addition, Tim really likes to hang out with his dad, who is his best mate.
John Forman's involvement (page creator)
I'm Tim's dad and I have 2 important roles relating to the condition he and Hollie were born with over 40 years ago. I am the Chair of Lysosomal Diseases NZ www.ldnz.org.nz and the vice-President for research with ISMRD, an international advocacy group for some of the Lysosomal diseases.
I spend a lot of my time when I'm not working at my regular job for the NZ Organisation for Rare disorders, working for LDNZ and ISMRD. Often I travel to meetings around NZ and around the world, and Tim often asks if he can come too. His disease limits him in many ways, physically and intellectually, and he has missed out on many things in life. It is tough to always be saying "no" when he wants to come along with his dad. This time I'd like to take him with me and this page is set up to help cover his travel costs. Tim is helping too. He has put up his collection of over 140 WWE wrestling DVDs on TradeMe and hopes to get a good price to help cover his fares.
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Latest update
There and back again 3 August 2015
Well we did it and we are now back home and over the jetlag. What an adventure for Tim - and a different sort of adventure for me. I survived but it was a busy and tiring time. The funds generously given enabled us to cover Tim's airfares and contribute some towards accommodation and other expenses. Thanks again so much to all who gave so generously.
I have posted lots of photos of the trip on my facebook page https://www.facebook.com/john.forman.125 These cover the 3 nights in Hollywood, seeing the sights, doing Universal Studios, and hanging out in the pub and café scene. Tim just loved it all, especially the movie related items. And the rides at Universal Studios were just SO GOOD. We then travelled to St Louis where John's conference and meetings were. Tim had support workers looking after him and an activity programme with lots of other children and adults with the same or similar diseases. He got to the famous St Louis zoo, the baseball museum, a baseball game, and other sightseeing. He also needed a couple of long sleeps on two afternoons to recharge his batteries, and fatigue is certainly one thing that goes with Alpha-Mannosidosis. After 5 nights there we moved on to Washington where Tim took part in an evaluation at the National Institutes of Health, to help understand the course of this disease. Our last day in Washington gave us time to visit the White House, Washington Monument, WW2 memorial, Lincoln Memorial, and nearby features. He slept nearly the whole time on our flights back home. He had an absolute whale of a time on the trip. I really enjoyed spending so much time with him too.
At the end of it he was a little weepy. He had such a great time I think he just didn't want to get back to life as it used to be. of course we all know that feeling don't we. It leads to immediate decisions to start saving for the next trip. You guessed it - that's exactly what he said he was going to do. :) :)
perhaps, one day, but it might take a lotto win.
Thanks again to all the generous donors. We could not have done it without your wonderful help.
John and timothy
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