Mojo’s Boneyard Hosting Fundraiser for Young Sisters with Rare Diseases
Mojo's Boneyard on Bellemeade Avenue in Evansville will host a fundraiser this Saturday for the family of two young girls who were born with extremely rare diseases.
According to the event details on Mojo's Facebook page, Alex and Zoe Appel of Evansville were born with both Trichothiodystrophy and Cockayne Syndrome. Trichothiodystrophy is so rare there are only approximately 100 reported cases worldwide. According to the Genetics Home Reference website, operated by the United States Library of Medicine, Trichothiodystrophy (TTD) is an inherited condition that can affect many parts of the body. The most common symptom is brittle hair "that is sparse and easily broken." The site goes on to say, "Most affected children have short stature compared to others their age. Intellectual disability and delayed development are common, although most affected individuals are highly social with an outgoing and engaging personality. Some have brain abnormalities that can be seen with imaging tests. Trichothiodystrophy is also associated with recurrent infections, particularly respiratory infections, which can be life-threatening."
While not quite as rare as TTD, Cockayne Syndrome also affects various parts of the body, most notably the head which is abnormally smaller than average. Other symptoms include failure to gain weight, and grow at a normal rate which results in "short stature and delayed development."
Both conditions also cause extreme sensitivity to ultraviolet light which can lead to severe sunburns after only a few minutes in direct sunlight.
Saturday's fundraiser at Mojo's will feature a silent auction where you can bid on the following items, all of which have been donated free of charge:
- 18" Sabian XSR Cymbal and one month FREE music lessons from Moore Music
- Cauley custom-made Maple Snare Drum (Keller shell) from Jim Cauley
- 2017 Autographed poster and CD from the band, Southern Culture on the Skids
- $250 Full Professional Auto Detail Service from Mills Body Shops
- $199 One Year Home Service Agreement from G.R. Freeman Heating and Air Conditioning
- $250 Legacy Video Service from River City Video
- Budweiser and Bud Light logo corn hole boards with matching bags from Working Distributors, Inc.
- Multiple beer signs including Original Sin, Lakefront Brewery Fixed Gear, Lagunitas IPA, Founders All-Day IPA, Founders Brewing, Old Speckled Hen and Kostritzer from Cavalier Distributing
- Schnitz logo pint glasses and t-shirt from Schnitz Brewery & Pub
- $300 Dual Exhaust package from Jeff Deckers Quality Automotive
- 4 General Admission tickets to Holiday World & Splashin' Safari for the 2018 season.
Monetary donations will also be accepted throughout the night, and Mojo's will donate at least 40-percent of the night's sales as well.
Doors open at 5:00 p.m. with live music from area favorites CW3, Monte Skelton with Patrick Preston, and The Cold Stares beginning at 8:00.
[Event Source: Mojo's Boneyard on Facebook]
[Medical Source: Genetics Home Reference via U.S. Library of Medicine]