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A Dear Friend Losing Jaw Function from Ankylosing Spondalytis

By Anonymous February 14, 2011 - 10:39pm
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My friend is 28 years old and has nearly lost the ability to eat due to the severe deterioration of her jaw joints caused by ankylosing spondalitis. Her friends from around the world recently made donations so we could to send her from Utah to the Mayo Clinic in MN where she learned last week of a procedure where they can perform 2 jaw joint replacements and one "break the jaw" surgery to bring her lower jaw forward. These joint replacements are only performed one place in the world - at the Mayo - and therefore the waiting list is long. Due to the severity of her case, the doctor said she will go to the top of the list. So what is my question?

Is anyone aware of any foundations or groups that are looking to sponsor AS or arthritis patients in need? I led the donation campaign to get my friend to the Mayo for this trip and we raised $2,000 and we will be seeking further financial help to make the next 3 trips for these 3 surgeries. The funds we need will be significantly more and I could use any advice you might have. Thank you. Susan Armstrong

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Thank you for your prompt reply. You have some very good ideas there. Yes the insurance will help out, but my friend has no discretionary income because she can't really work due to health issues. Therefore, we need to raise several thousand dollars to cover these 3 trips. We're still figuring the total we need for our campaign. Thanks again for the good ideas. I'll let you know how it goes.


February 17, 2011 - 10:43pm

Hi Susan,
Thank you for your question and for advocating for your friend. Paying for medical bills and the added expenses that come along with it can be overwhelming. What is being covered by insurance, and what your friend can afford to cover? Is there a particular organization your and/or your friend belong to that supports and provides resources for AS patients? Have you asked at work about donations, and ask friends to see if their companies match donations made to organizations. Some corporations, like Target and Wal-Mart sometimes will make donations if you hand deliver a letter to the local store's manager asking for support for a particular organization. You also can hold raffles at a local eatery and comb the local businesses for donations of gift certificates, and product to raffle off at the event. I once raised close to $4000 for the American Heart Association doing these things.
Here are some resources you also may be able to send a letter to and partner with to help your friend (if you're not already working with them):
Spondylitis Association of America, Abbott Labratories, The Arthritis Foundation
Good luck, and let us know how it's going, and how your friend is doing.

February 15, 2011 - 8:54am
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