If you haven’t watched “The Ataxian” movie, we highly recommend renting or purchasing the the movie. It has won several awards and has been reviewed by many critics. One of our favorite reviews is by The New York Times and this is just an excerpt from that review:
“A couple of years back, the ice bucket challenge was a social-media sensation, raising an estimated $115 million for research into amyotrophic lateral sclerosis, or Lou Gehrig’s disease.
Not all such ailments receive that kind of visibility — or promotion. Friedreich’s ataxia, a little-known, progressive, fatal neuromuscular disease, has no cure; most heartless of all, its onset usually occurs in young children, who are unlikely to reach the age of 30.
“The Ataxian” follows Kyle Bryant, an athletic, charismatic Californian with the disease whose ability to walk and speak has already been impaired, as he channels his energy into raising awareness and money for research. He wants, he says, “to do something crazy!” and assembles a team of four bicyclists — including himself (on a recumbent bike) and Sean Baumstark, a friend who also has the disease — to take part in Race Across America, an annual competition that covers 3,000 miles in nine days…”
– By Daniel M. Gold, The New York Times
To learn more about “The Ataxian” movie, click here.
Reata Pharmaceuticals has enrolled the first patient in the pivotal Part 2 of its MOXIe study designed to evaluate omaveloxolone (RTA-408) in Friedreich’s ataxia (FA) patients. Learn more about this by clicking here
On April 18, 2018, Virgil Harris was recognized by the Jefferson Awards Foundation for his service to the community. Mr. Harris organized and started Jumpin’ for Jazz (a charitable organization) to find the cure for Friedreich’s Ataxia and its devastating complications through the support and advancement of research; and to actively serve the 5,000-6,000 young people in the United States affected by Friedreich’s Ataxia — a rare, untreatable and incurable disease inherited at birth.
Channel 6 (rtv6 Indianapolis) featured Mr. Harris in a news article that you can access here – Click Here
The Jazz Kitchen, Indy’s greatest jazz club, will host a benefit concert for Jumpin’ for Jazz on Sunday, June 10, from 1:00 to 4:00pm.
Look forward to enjoying the music of:
The Rob Dixon Trio
The Morris Kienle Duo (featuring Cathy Morris and Peter Kienle)
Fresh Water (featuring Vivek Hadley, Nick Tucker, and Clint Breeze)
$20/person online. To purchase tickets in advance, Click here
$25/person at the door
For more information about the Jazz Kitchen, Click Here
Jumpin’ for Jazz Benefit Concert 2017
The Jazz Kitchen, Indy’s greatest jazz club, hosted a benefit concert for Jumpin’ for Jazz on Sunday, June 4, 2017. We were so happy to see all of our supporters where we all enjoyed the wonderful talents of local jazz favorites, the Becky Archibald Quintet, the Tucker Brothers Group, and the Jerrell Smith Project. The benefit was a great success and provided resources for those suffering with the progressing and debilitating disease Friedreich’s Ataxia.