End fatal neurological disease

Rare Trait Hope Fund

Rare Trait Hope Fund is a 501(c)(3) non-profit organization (EIN 46-2762646) with the mission

  • to raise funds, facilitate research and support development of treatments and a cure for Aspartylglucosaminuria (AGU);

  • to be the resource for doctors, scientists and families world-wide;

  • to increase awareness of rare diseases in general and Aspartylglucosaminuria in particular.

Rare Trait Hope Fund gives grants to groups and organizations that work directly on finding a cure and/or developing a treatment for Aspartylglucosaminuria. We do not cover indirect (overhead) costs on any research grants. If you are interested in the work related to Aspartylglucosaminuria, please contact us at kids.progress(at)raretrait.com.

Together we can achieve our goals and make the difference in fatal diseases.

Our journey started in September 2012, when Julia and her family went to Finland to talk to doctors who have knowledge of Aspartylglucosaminuria and other AGU families. A lot of AGU research was done in Finland which is where a lot of families with children affected by AGU live. During their stay in Finland, Julia and her family met with a family from France whose daughter Hermance had been diagnosed with AGU just a few months prior. It feels good to know that you are not alone in this world! During the trip they learned that most of the AGU research efforts had stopped due to lack of funding and/or interest and no group was currently working to develop a treatment for AGU.

Equipped with knowledge of the problem and with no other place to go, they decided to work on a solution and save their kids’ lives! They interviewed a lot of researchers and discussed ideas about the development of an AGU treatment. In December of 2012, they started a project to develop a treatment for AGU.

Soon after, they set up a non-profit 501(c)(3) organization in the US and in France with a mission to raise funds to offer hope and an eventual treatment for every person affected by Aspartylglucosaminuria. We are developing the cure together with fundraisers just like you. Please, donate.