Why help kids with AGU?

Imagine your child is dying. He knows it—he’ll be aware of his mind and body deteriorating before dying in his twenties. You’ve been told the disease is so rare that no drug companies can profit from a treatment.

Now imagine that a treatment has been found that may not only cure your child but reverse the damage already done. You've worked with other families for years to get the treatment manufactured, but the children can’t access it until it’s been paid for in full. Instead, the treatment sits in a freezer. Waiting. What would you do to save your child’s life?

This is the reality for our family and our 8-year-old son George. George is rapidly running out of time, and all that’s standing in the way is money. Please help make a difference before it's too late for these kids. Make a donation to the Rare Trait Hope Fund and help give AGU children a future.

This brief video explains AGU & our plan to cure it.

Looking for other ways to help? Host a "Gather for George" event!

“Gather For George,” will help us purchase life-saving medical treatment, and we hope you can help. Our goal is to have at least 100 Gatherings in the month of October. Gatherings can be big or small. The idea is that your guests will donate what they can to help George during your event. It’s a casual, social way to raise money for the cure. You can set the date and be as creative as you like. A few examples include: 

- Pizza and a movie for the kids (parents drop off the kids and enjoy a night out)

- Donuts at the park

- Hosting a sit-down dinner in your home 

- Girls’ night out with manicures and desserts

If you want to promote this to some of your friends and you need ideas on how to reach people, here are some ways you can go about it:

- Reach out to the communications department at your workplace and ask if they will share

- Share with your neighborhood email list

- Share with your church community

- Share with the parents from your kid’s class at school

- Share with extended family who might host something like this

If you’re willing to get involved, please email us back and we can get you additional information on how to make it happen (including graphics to share on social media, links and information to collect donations, etc.). Thank you for helping us save this sweet boy’s life! 

About our fund

Rare Trait Hope Fund is a 501(c)(3) non-profit organization (EIN 46-2762646) founded in 2013 by Julia Taravella. When Julia received an AGU diagnosis for both of her sons, she set out to find a way to help her kids. Thanks to her work, we are where we are today: the treatment has been produced.

Families of AGU children from around the world are joining to raise money to purchase the produced treatment. There are George, Daniel, and Alexander in the U.S., Trisha in Australia, Hermance in France, and Makeda in Canada to name a few. Each family is working tirelessly to raise funds in their respective countries. All funds raised will come together in the Rare Trait Hope Fund to help save these sweet kids. Helping George helps so many others!