Julia Taravella is fundraising
Hope for AGU Cure
Parents of Daniel and Alexander, Sydney and George, Hermance, Makeda, Trisha, Selman, Jor and half a dozen more children know that these kids are destined to die soon. We desperately need to save their lives!
Daniel is 25 years old and if he is not given the treatment soon, he will be the first one to die. Daniel and these kids have a fatal ultra-rare disease called Aspartylglucosaminuria (AGU for short). This disease presents as an autism-type disorder and will steal their intellect, mobility and speech before they die young (between 25 and 35 years of age). AGU is so rare that there are only 9 cases in North America and approximately 150 kids with the disease around the world.
Until now there has been no treatment, but finally we have a solution and potentially a cure! There is an upcoming gene therapy trial that will likely cure this disease and save lives of these children. We are in a race against time to save these kids. While there is a treatment, there is no government or commercial funding. It is up to us to raise money to fund clinical trials and make the medicine for this treatment.
$2 million dollars required to make the medicine seems like an impossible amount for the few parents of AGU kids to come up by themselves. We continue to work relentlessly doing everything we can to raise money needed, but we still need your help! Not only will this clinical trial save these kids' lives, but it will also help save many more children's lives having similar conditions.
Please, will you help save these lives? If one million people gave just a few dollars each, 150 lives will be saved and many, many people can be saved from the unimaginable anguish of losing these beautiful children. Thank you for your contribution to this cause that means so much to us. Please, spread the word!
More information about Rare Trait Hope Fund: Our goal is to develop treatment for ultra-rare diseases that no one cares about. We are starting clinical trials soon for Aspartylglucosaminuria (autism-like fatal child's disorder). Help up save kids' lives and fight this autism disorder. More information is available at www.raretrait.com
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