My name is Kareem Ghadban; you probably know my Mom (Hanna) or Dad (Ashraf). I have a rare genetic disorder called Niemann–Pick disease type B , I’m only 8 so I don’t know what all the big words mean like ‘acid sphingomylinase’ and ‘Lysosome Storage’ but you can find more here http://www.nnpdf.ca/npdisease_04.html.

I was diagnosed with this rare disorder back when I was 3 years old now I’m currently in grade 3 and feeling great. Although this hasn’t stopped me from being a normal 8 year old (except I would love to play hockey!) I’m afraid it will in the near future. We found out that a hospital in New York is doing some clinical trials for something they call enzyme replacement therapy and I hope it will be available in the near future for me, so I can play hockey and don’t have to worry about my liver and spleen being larger than a football.

When my dad told me about this trip I said “let do it, it would be fun and it will help people understand what I have and allow me to raise some money for a clinical trial study for Niemann–Pick Type "B". So here we are If you could please help us get to our goal so we can go see the arctic and raise awareness for my disorder that would be awesome and I would very very very much appreciate it.

Here are some of the details of the trip we hope to take on;

On August 11, 2011, I hope to be one of a dozen Canadians with rare disorders to set forth on an out of this world adventure. Our destination: the Arctic Circle. Our goal: to show that people with rare disorders can do just about anything…with the right treatment and support.

This is the plan (August 11-20, 2011):

Aug 11---Fly Ottawa to Pangnirtung
Aug 12---Pangnirtung (Visit local health services)
Aug 13---Pangnirtung - Ikuvik Trail
Aug 14---Boat transfer Pangnirtung – Auyuittuq
Aug 15---Towards Windy Lake
Aug 16---Hiking - Windy Lake – Mount Thor – Windy Lake
Aug 17---Hiking - Windy Lake – Overlord
Aug 18--Hiking to Overlord then boat to Pangnirtung
Aug 19--Spend day in Pangnirtung
Aug 20---Fly Pangnirtung to Ottawa

For a Fact Sheet and FAQ's please go to www.raredisorders.ca/ArcticQuest2011.html

If you’re a big company or even a small one you can also help me with a sponsorship, I will add your logo to my page and will be wearing a special Jacket with all the logo’s on it that helped me get to the Arctic.


Thanks
Kareem (A.K.A: Kummy)

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