Our family is doing a fundraiser on June 9th from 5-10 at the Columns in Avon to raise money to combat SSADH, an extremely rare disease that our two daughters, Amber and Haley have (there are about 350 cases of this worldwide). They have been participating in clinical trials at the National Institute of Health this past year in the hopes that a new drug, SGS 742 and now even further research can help them and other patients. We could use your help ! We want you to come and share in our effort !! If you can't, then we would be most thankful for any donation. You can find out more details by looking at the attached flyer and / or by going to our website www.waveofhope-ssadh.org Other SSADH families around the country are fundraising too. All donations go to the SSADH Association a fully accredited 501K charity and organization established solely for this.
Sunday - June 09, 2013
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