To enhance the quality of life for kids with Giant Axonal Neuropathy while funding critical research efforts.

We started All In For Ethan in 2011 when we realized there was a need to be filled in the lives of the families affected by Giant Axonal Neuropathy (GAN). We recognize that living with GAN can make daily life difficult. As the disease progresses, children with GAN lose their ability to walk, feed themselves and even speak. These kids face a lot of hardship and discouragement in their lives. Our aim to provide assistance that will enhance their overall quality of life in the meantime, with hope for a cure in the future.

In the past, we have provided these kids with equipment that will assist them in their daily life as the disease progresses. This ranges from household items such as diapers and liquid thickener (ordinary swallowing becomes a problem), to bigger services such as airfare to get to the NIH for treatment, therapy, training and equipment to be able to operate a car, durable medical equipment and respite services. We also provide fun items to lift their spirits in the face of this debilitating disease, such as  concert tickets, movie passes, birthday parties, room makeovers and iPads (which are usable even with limited coordination).

All in for Ethan is a 501(c)3 organization. In addition to enhancing the quality of life for kids with GAN, we fund a portion of Dr. Steven Gray’s groundbreaking GAN research at UT Southwestern Medical Center in Dallas, Texas in the hopes of developing a cure.