OFH Playing – All In For Ethan
All In For Ethan was started to help the needs of families affected by Giant Axonal Neuropathy (GAN). The mission of the foundation is to enhance the quality of life for kids with GAN while funding critical research efforts.
| Out For Hours will be performing February 22nd, 2020 at Gibsons Bar & Steakhouse in Oak Brook. The event goes from 7:00PM – 11:00PM. Information and tickets can be found HERE. |
From All In For Ethan –
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.