Plano, TX — EDS today announced that the EDS Foundation has approved a $40,000 grant to the Friedreich's Ataxia Research Alliance (FARA) to fund the organization's Website redesign and upgrade, as well as enhancements to its patient registry. Both projects will build upon technologies created and supported by EDS volunteers and will facilitate FARA's mission of education and advancement in treatments and a cure for Friedreich's Ataxia, a rare genetic disorder causing neurodegeneration. This marks the first year that the EDS Foundation has supported the Virginia-based nonprofit organization.

"We are thankful that the EDS Foundation has become the largest sponsor of this project, which will help us redesign our Website, and also facilitate recruitment for clinical trials through our patient registry," said Ron Bartek, president of the Friedreich's Ataxia Research Alliance. "This information technology solution will increase FARA's access to key audiences and support a growing technical infrastructure that has been developed by EDS volunteers and for which FARA is extremely grateful."

The National Ataxia Foundation (NAF) and the Friedreich's Ataxia Research Alliance (FARA) announced today that the $100,000 Kyle Bryant Award will go to translational research being done by Australian researchers and their British collaborators into the catalytic antioxidant CTMIO as a possible treatment for Friedreich's ataxia (FRDA).

The research proposal was submitted by Dr. Nuri Gueven at Queensland Institute of Medical Research in Australia. The title of the proposal is "Use of a novel catalytic antioxidant, CTMIO, in a GAA repeat mouse model of FRDA." The mouse model and application of CTMIO to the mice will be provided by the London team of Dr. Mark Pook while the analysis will be done in Dr. Nueven's lab in Australia.

Zane is friendly and happy. He canvasses the halls of Perrysburg Junior High like an old-timer, even though he's only been there a little more than a month.

The period of adjustment is over - for him and for the school. Zane lounges on the floor as if the place is home. Students and staff know better than to bother Zane, at least when he's working.

That temptation is a tough one to avoid, too, because Zane is popular, gregarious, and handsome.

But it's important because Zane, a two-year-old black Labrador retriever, is an assistance dog, the first Perrysburg schools have had.

He assists a boy named Zac Zies, a sixth-grader afflicted with a rare genetic disease called Friedreich's ataxia. It causes muscle weakness and loss of coordination.

Read More: Assistance dog provides learning situation for all

Every day is a challenge for Margaret Ferrarone's daughters, Sara and Laura. Both girls are wheelchair-bound. For them, even the simplest daily activities — getting out of bed, cutting their own food, positioning toothpaste on a brush — pose a challenge.

Sara, 20, and Laura, 17, suffer from Friedreich's Ataxia (FA), a rare genetic disease that causes progressive damage to the nervous system and muscles. Symptoms, which generally appear between the ages of five and 15, can include muscle weakness and loss of coordination, vision impairment, slurred speech and heart disease. Within eight to 10 years of its onset, FA usually results in an inability to walk. There is currently no treatment or cure.

Having always been an optimistic person, I guess there are perks to everything. My family would never have experienced meeting and helping Mary Stuart Masterson with her film, The Cake Eaters if it hadn't been for living with the disease Friedreich's Ataxia. The communication with Mary Stuart happened quickly and, at first, I did not realize who I was speaking to even though I know many of her staring movies like Fried Green Tomatoes and my favorite Benny and Joon . You don't expect a movie star to contact you directly. After a few emails, we were off to New York to meet Mary Stuart, actor Jeremy Davidson, her brother Peter Masterson and Jesse Scolaro for interviews to assist the cast and crew with their research for Friedreich's Ataxia (FA).

Living with Friedreich's Ataxia, my daughters Sam and Alex Bode take on each day of their lives with unbelievable courage and many challenges. They overcome things that we too often take for granted. I don't mean just walking, I mean simply trying to maneuver a glass of water to their mouth, trying to reach for a fork or trying to get enough breath for a whole sentence. And doing these intricate daily tasks take up all of their energy. You can only imagine how empowering it was for my girls to work on a movie project like this. And as a mother, how rewarding it was for me to see them contribute to something and feel great about it. It also helps that Mary Stuart Masterson turned out to be one of the most kind and compassionate people we have been graced to meet! Her insight and patience was so genuine! We had a blast spending time with them while they interviewed us and asked some pretty personal questions.

Read More: The Mothers and Daughters of The Cake Eaters