We would like to take this opportunity to thank editor Bob Uphues for writing such a thoughtful and informative article about our plight to save our son’s life which was featured in the April 28 issue of the Landmark (“The enormous task of helping a little boy,” News).
On behalf of Hannah’s Hope Fund for GAN (www.hannahshopefund.org) we would like to express our gratitude to all the people in our community who sent donations and kind words towards our cause.
The proceeds, which totaled over $32,000, from the benefit for Ethan Tkalec on May 13, will be used to develop promising therapies to slow, arrest and cure giant axonal neuropathy (GAN) at the University of North Carolina’s Gene Therapy Center.
GAN is a rare terminal disorder that progressively kills every nerve cell in the body, first impacting walking. It eventually renders its victims quadriplegics, with feeding tubes and ventilators to assist with breathing.
Presently there is no medical protocol or treatment to offer hope for children with GAN. Hannah’s Hope for GAN is changing this! Hannah’s Hope Fund for GAN’s sole purpose is to raise funding and awareness to find a treatment and a cure for all children affected by GAN.
We still need your continued support in order to fund life saving research to cure GAN. We need to raise $1.2 to $1.6 million per year for the next two to four years in order to be ready for a human clinical trial. Your donation will provide funding for essential research and ultimately a cure. Please help us make the hope of a cure become a reality for our son.
If you would like to help make a difference for GAN children, please make checks payable to: Hannah’s Hope Fund for GAN and mail them to the Tkalec Family, 314 Northwood Road, Riverside, Ill. 60546. Any donation great or small is deeply appreciated.
John and Gelse Tkalec