Friday, February 22, 2008

Getting Started!

April for Alex. A new adventure...fundraising!
I have decided to accept the challenge posed by Glenn and Ginger Irvine, who we met in London this past fall, and do my best to help raise funds and hopefully bring a bit more notice to neuroacanthocytosis.
Alex lives in London with her parents. I had the pleasure of meeting her and her cat, KC, while traveling there in September 2007. Alex turns 37 this year. She first exhibited symptoms of this disease at the age of 24, two years after graduating Tufts University. Alex works hard at daily tasks that become more and more difficult due to ongoing degeneration of her body because of Neuroacanthocytosis. Specifically, chorea-acanthocytosis.
I had the great pleasure of speaking with Dr. Susan Hayflick at OHSU this week. She works primarily on a group of disorders related to neuroacanthocytosis called neurodegeneration with brain iron accumulation (NBIA). She has been involved with research at OHSU for some time and they have had great success in identifying two genes involved in NBIA. For more info on Dr. Hayflick, please google Dr. Susan Hayflick (I know a specific website would be easier, there's just so much info and this will allow you access to it all!).
So, there are some differences between Alex's disorder and the NBIA that Dr. Hayflick researches, however, she made an interesting point while I chatted with her. There is an "intersection of the disorders" that warrants coming together to discuss the similarities rather than being polarized because of the differences. Research could be moved forward by working together. She has accepted an invitation to speak at the UK Symposium July1-2, 2008.
Okay, this is where I come in with fundraising. I would like to assist by helping to raise funds to assist Glenn and Ginger's cause in helping pay costs of Dr. Hayflick and others who have agreed to fly to London/Oxford this summer and with any good fortune to send some on to research.
During the month of April, I will be walking (my goal is 80 miles for the month) and hope to have your support with $$ per mile pledges or a set $$ amount. Please send me an email at
Thanks in advance for your support!

For more info: or google Dr. Susan Hayflick.

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