Friedreich’s ataxia

I had no idea what to expect last night because we hosted our first fundraiser. I didn’t expect a huge turn out for the event, but the entire bar was full of people. We raised $4,916 last night; the money came from from individual donations, a cover charge and from people who purchased items in the auction. We have now raised a total of $9,593, which means we can make a deposit to the hospital in China to secure a trip. The total cost of the trip will be about $50,000.

I want to thank everyone who came last night to show their support and thank those who donated items for the auction. Pictures will be posted soon, and more events will be added to the calendar shortly. It was inspiring to see so many people last night who came up to me who wanted to make the trip happen. A lady I didn’t even know named Tina, for example, won the raffle and could have taken home $275. Instead, she donated her winnings. Thanks again everyone.

–Mandy Burris

We’re brainstorming fundraiser ideas. If you have any ideas, let us know by leaving a comment below or e-mailing mandysmission@gmail.com.

If you’re with a band or business — or you just want to help — let us know. Thanks.

The Clinton Daily Democrat published a letter written by Mandy in its Dec. 13, 2007, edition. Although the newspaper doesn’t publish a Web site, readers can purchase the newspaper at its office in downtown Clinton (map here). The article appears on the front page.

What: Auction, concert

When: Saturday, Jan. 26, 2008; starts at 8:30 p.m.

Where: Z Bar & Grill (1122 Se Highway Z, Deepwater, MO 64740 | click for map)

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Who: Kansas City oldies band Shelter Revisited

Why: All proceeds will go to Mandy’s Mission

Cover charge: $5

More information: To donate items for the auction, contact Z Bar & Grill at (660) 438-9100. To contact Shelter Revisited, contact Jackie at (816) 769-3967 or e-mail bandinfo@shelter-revisited.com. For future events, click “Event Calendar” on the left sidebar.

Mandy Burris, 21, of Osceola, Mo., suffers from Friedreich’s ataxia (FA), a genetic, progressive disease that causes loss of coordination and balance. In some cases, it can cause heart and speech problems. Mandy doesn’t have a sense of balance and leans on someone or something to get around, and she often feels fatigued.

There is currently no cure for FA. Stem cell research is the most promising development in reversing damage and regenerating lost capabilities, according to the Friedrich’s Ataxia Research Alliance. Mandy takes vitamins, but this doesn’t make her feel 100 percent. She has good days and bad days. The good news is that Mandy doesn’t suffer from many of the disease’s symptoms. FA, however, is a slow progressing disease, and more severe symptoms can strike many years after diagnosis.

Mandy plans to travel to China to receive stem cell treatment. A British woman became the first person to ever receive stem cell treatment for FA in 2005 (BBC article here). Stem cells from the umbilical cords of babies were injected into her blood. Although few media outlets followed the treatment, she did report improvements, including feeling more energetic.

Treatments cost roughly $50,000, and Mandy plans to travel to China in the spring of 2008. This blog will entail Mandy’s experience with FA, fundraising efforts and stem cell treatments.

To donate, stop by any Hawthorn Bank in Missouri, or send a check under “Mandy’s Mission” to Hawthorn Bank — Downtown Banking Center; 102 N. 2nd St.;Clinton, MO 64735.

–Trevor Davis