When the Friedreich's Ataxia Research Alliance (FARA) recognized the value of having a patient registry process and data repository to collect patient information globally, they called their friends at EDS for a technical solution. FARA knew that having this information at its fingertips would give them the ability to identify candidates for clinical studies within a short timeframe as well as enable outreach activities through education materials and newsletters.

After gathering FARA's high level requirements, a team of EDS volunteers from Rochester, N.Y., turned to their local education partner - Rochester Institute of Technology (RIT) - to see if the project would be a fit for RIT's B. Thomas Golisano College of Computing and Information Sciences' Software Engineering Department's senior capstone project.

RIT's undergraduate software engineering curriculum calls for students to work as a team, much like they would in a real job environment. The senior capstone project is completed over a 20-week period. The educational value is further enhanced with the curriculum requirement that students complete the project for a real client.

In early May, the Van Schoik family hosted a party at their Bogart home where more than 100 people attended, two bands performed, the weather was perfect and visitors danced until the late hours.

"We had a blast," Nelda Van Schoik said. "It was a lot of fun."

However, the fun was underscored by the serious reason the party was held. Two of Nelda and Robert Van Schoik's three daughters - 26-year-old Robbi and 23-year-old Becca - suffer from Friedreich's Ataxia, and the gathering, which included a silent auction, was held to raise money and awareness for the disease.

According to the Friedreich's Ataxia Research Alliance, the disease is an inherited one that causes progressive damage to the nervous system, resulting in symptoms ranging from weakness and speech problems to heart disease. There is no cure for Friedreich's Ataxia, although researchers have been able to establish treatments to deal with some of the symptoms and complications from the disorder.

In the past three years, the Van Schoiks have been able to raise about $35,000 for the Virginia-based FARA, an organization founded in part by parents whose children suffer from the disease.

Read More: Time for giving

Washington, D.C. — Friedreich's ataxia patients and families have more reason than ever to welcome the approach of "Friedreich's Ataxia Awareness Day" on May 20th. The third Saturday of May is recognized in Congressional and state proclamations and through various events around the country as "Friedreich's Ataxia Awareness Day." Friedreich's ataxia is a fatal, hereditary, degenerative, neurological disease that typically first becomes noticeable when children are in elementary school.

An extraordinary explosion of research insights has followed the identification of the Friedreich's ataxia gene in 1996. Now, only ten years later, there is increasing conviction that treatments will soon be developed for Friedreich's ataxia and that the resulting insights will be broadly applicable across a wide range of neurological disorders such as Parkinson's, Huntington's, Alzheimer's, ALS and a number of rarer diseases as well.

The Van Schoick family is hosting a party from 8 to 11:30 p.m., Saturday to raise funds for the research of Friedreich's Ataxia. The party is at 1001 Hammond Creek Trail, Bogart.

Live music will be provided, along with raffles, dancing, door prizes, food, beer and wine. Casual dress is recommended.

Friedreich's Ataxia is an inherited disease that causes progressive damage to the nervous system resulting in symptoms ranging from muscle weakness and speech problems to heart disease. "Ataxia," which refers to coordination problems, occurs in many different diseases. In Friedreich's Ataxia, ataxia results from the degeneration of nerve tissue in the spinal cord and of nerves that control muscle movement in the arms and legs.

Read More: Fundraisers party to help Friedreich's Ataxia group

Washington, D.C. — The Friedreich's Ataxia Research Alliance (FARA) has awarded a $3 million grant to Edison Pharmaceuticals to advance the development of EPI-A0001 for the treatment of Friedreich's ataxia. While continuing to support Friedreich's ataxia research intended to discover potential therapeutic approaches, FARA, with this new grant, demonstrates its additional focus on translating such discoveries into therapeutic initiatives — moving from drug discovery to drug development. FARA's board sees this new step as part of developing a balanced portfolio of both research and development initiatives, and will seek to fund other promising therapeutic programs through a variety of mechanisms.

"The Edison program is compelling in terms of the quality of science, the experience of the team and the promise it shows for treatment in the near term," stated Mr. Ronald Bartek, President of FARA. "FARA's mission is to slow, stop and reverse the damage done by Friedreich's ataxia. This first FARA grant in drug development reflects the fact that we believe scientific research is on the threshold of treatments that will stop this disease in its tracks — even beginning the process of reversal. FARA is proud to have played a role in Edison's kickoff and we are eager to help move its program promptly through the required preclinical stages."