Please join us for a special Gala dinner and support our fundraising efforts to commence gene therapy for our son Archie and the few children world wide who have ECHS1d.
This fun night will have a live band, a fun dance performance, an exceptional 3 course meal including beer, wine and soft drink, a live auction and silent auctions to match. Please invite your family and friends to join us!
There is currently no cure or treatment for ECHS1d. Our mission, along with other families living with ECHS1d, is to fund the commencement of gene therapy research and trials at the University of Texas, South Western Medical Center, USA. All money raised on the night will be pooled together with fundraising efforts from the other families to commence trials.
Gene therapy for extremely rare diseases is proving to be the only hope for a longer and better quality of life. We have specific hopes that gene therapy will provide our son Archie with better motor control and assist with speech.
We hope to see you on October 12!