MCCA to hire alternate caterer for Green meeting Sep 5, 2008
1m for Friedreich's ataxia research of Waltham said it has received $1. 125 million in research grants to support the development of new treatments for Friedreich's ataxia, an inherited neurodegenerative disease ... The research grants are made up of $1 million from the Muscular Dystrophy Association and $125,000 from the Friedreich's Ataxia Research Foundation and the National Ataxia Foundation, the company said. (Boston Globe)
Neyland family working for a cure for Muscular Dystrophy Sep 4, 2008
My younger sister, Betsy, and I were diagnosed with a form of MD called Friedreich's Ataxia, when we were children. NewsWest 9 hosts the local portion, with Crystal Crews, Michael Stafford, and Tom Teferteller as emcees. (Fort Stockton Pioneer, TX)
Help 'Find a Cure' Sept. 5 at Owenego Aug 25, 2008
Mary Caruso and her daughters, Sam and Alex Bode, will join with friends and supporters under the stars to raise money to fight this degenerative neuromuscular disease. The event begins at 6 p.m. Sept. 5, and in addition to the silent and live auction, will include a presentation from Penn West Pharmaceuticals, talking about the promising work toward finding a cure for this rare genetic disorder. (New Haven Register, CT)
Santhera First-Half Loss Widens as Spending on Medicine Research Increases Aug 22, 2008
It's the first treatment for Friedreich's Ataxia, which confines patients to wheelchairs and leads to premature death ... Friedreich's Ataxia affects about one in 25,000 to 50,000 people. (Bloomberg -- Europe)
NASCAR team reports Aug 14, 2008
the Nationwide Foundation (Columbus, Ohio) and Friedreich's Ataxia Research Alliance (Exton, Pa. . (USA Today -- Sports)
Breakthrough in crippling childhood disease Friedreich's ataxia Jul 29, 2008
Breakthrough in crippling childhood disease Friedreich's ataxia ... Breakthrough in crippling childhood disease Friedreich's ataxia ... Breakthrough in crippling childhood disease Friedreich's ataxia. (News-Medical.net)
Megliola: The strength of family Jul 28, 2008
Lindsay, Billy's 22-year-old sister, hasn't been tested for Friedreich's Ataxia. "She doesn't want to know yet," says Kathleen. (Framingham TAB, MA)
Communities come together for one of their own Jul 4, 2008
After a series of tests at Connecticut Children's Medical Center one year ago, Brian was diagnosed with Friedreich's Ataxia (FA) ... In the past year, people throughout Newington and the Hartford area have helped raise approximately $24,000 to help find treatment and a cure for Friedreich's Ataxia ... Several executives and colleagues at UTC where Glen Bianchi used to work also made "substantial donations" to the Friedreich's Ataxia Research Alliance (FARA) through the United Way Giving... (Rocky Hill Post, CT)
Girl inspired to help fund Friedreich's Ataxia research May 28, 2008
" For her part, AnnMarie is pretty certain she'll continue in the fight against Friedreich's Ataxia, although she's not sure what form her next project will assume. "We might do another toy drive," she said. "But I'm not sure yet. " For more information, visit www.benefitbash.org. CREDIT:Tricia Spaulding/Staff CAPTION:From left, Rebecca Van Schoik, AnnMarie Marlow and Robbi Van Schoik pose in the Van Schoik home in Oconee County recently. AnnMarie hosted a toy drive and sale this year and raised... (Athens Banner-Herald)
Support Research for Friedreichs Ataxia May 20, 2008
Evan Luebbel has Friedreich's ataxia. Friedreich's ataxia (FA) is a rare neuro-muscular problem disease with no cure, yet. (WOKR13 Rochester)
Chamber recruiting teams for golf tourney Apr 23, 2008
Friedreich's Ataxia event set for April. The Van Schoick family in Oconee County will hold its annual fundraiser to benefit the Friedreich's Ataxia Research Alliance on Friday with a golf tournament and a fiesta highlighting the day. (Athens Banner-Herald)
Nashua woman beats amazing odds Apr 23, 2008
she was diagnosed at the age of 10 with Friedreich's Ataxia (FA), a neurodegenerative disorder that progressively weakens multiple systems within the body. FA is one of the rarer forms of muscular dystrophy, and both parents must carry the same defective gene to cause it. (Wahpeton Daily News, ND)
Heartache, hope fuel Olympic torchbearers Apr 5, 2008
He was diagnosed a year ago with Friedreich's ataxia, a genetic disease that "took me hostage and has ruled with tyranny over my muscles." He's forming a nonprofit to aid people with rare diseases. The winners are an eclectic lot - as varied as the 136-day journey of the torch itself, which will cover 85,625 miles and stop in San Francisco between Paris and Buenos Aires. (San Francisco Chronicle)
Cyclists Bring Attention to Disabling Disease -- Friedreich's Ataxia Mar 28, 2008
Among the cyclists, a young man named Kyle Bryant, who isn't letting Friedreich's ataxia slow him down ... Bryant was diagnosed with Friedreich's ataxia about 10 years ago. (KLAS-TV.com, NV)
Continue reading Feb 27, 2008
He had Friedreich's Ataxia, a rare, degenerative neuromuscular disease that affects only one in 50,000 people ... Friedreich's Ataxia is a genetic disease that causes progressive damage to the nervous system resulting in symptoms ranging from a loss of balance and coordination and speech problems to heart disease ... Luke, their middle child, is healthy, but when their 10-year-old daughter Kennan was 4, Tracey recalls clearly the day she saw her exhibiting the telltale signs of Friedreich's... (Kingsburg Recorder, CA)
Woman, Her Dog Share Same Degenerative Disease Jan 5, 2008
In high school, students bullied Ford whose Friedreich's ataxia was beginning to cause her to limp hurling spit wads and verbal abuse, even shoving and kicking her. Ford's autobiography will detail those painful years and how she slowly regained self-confidence, eventually giving anti-bullying talks at local schools, conferences and conventions. (Fox News)
Betsy's Fight to End FA Dec 13, 2007
Fort Stockton residents have another opportunity to help fight Friedreich's Ataxia, the disease that has claimed the life of Betsy Neyland, and threatens the life of her sister, Emily ... Friedreich's ataxia is an inherited disease that causes progressive damage to the nervous system resulting in symptoms ranging from gait disturbance and speech problems to heart disease ... The ataxia of Friedreich's ataxia results from the degeneration of nerve tissue in the spinal cord and of nerves that... (Fort Stockton Pioneer, TX)
Letter to the Editor: Dec 13, 2007
December 17 (Monday) will be Betsy's Fight to End FA. Friedreich's Ataxia (FA) is the disease that Betsy Neyland died of last January and it is the disease Emily Neyland has. We are raising money for a cure at the First United Methodist Church from 6-9 p.m. with a silent auction, bake sale, chili meal and Kiss the Pig contest. (Fort Stockton Pioneer, TX)
The other Brady cover boy Sep 26, 2007
We're told Brady's actress ex was paid in excess of $100,000 for the photo shoot, and donated all of the dough to children's charities, including the Friedreich's Ataxia Research Alliance and the Epidermolysis Bullosa Medical Research Foundation. (According to the mag, Moynahan has friends whose kids are afflicted by the diseases. (Boston Globe)
Annual MDA telethon coming up on Labor Day! Sep 1, 2007
I have two daughters, Betsy and Emily, that were diagnosed with Friedreich's Ataxia at ages 10 and 12. Friedreich's Ataxia (FA) is one of these diseases under the MDA umbrella. (Fort Stockton Pioneer, TX)
European EMEA Acceptance of Marketing Authorization Application Filing for SNT-MC17 in Friedreich's Ataxia by Santhera Aug 16, 2007
LIESTAL, Switzerland and OSAKA, Japan, August 16 /PRNewswire-FirstCall/ -- Santhera Pharmaceuticals (SWX: SANN, "Santhera"), a Swiss specialty pharmaceutical company with a focus on neuromuscular diseases, and Takeda Pharmaceutical Company Limited (TSE:4502, "Takeda"), jointly announced today that the European Medicines Agency (EMEA) has accepted the filing of the Marketing Authorization Application (MAA) for Santhera's lead compound SNT-MC17 (INN: idebenone, originally developed by Takeda) for... (PR Newswire)
Faith & family Jul 22, 2007
Andrew has Friedreich's ataxia ... He typed "Friedreich's ataxia" into Internet search engines and felt his heart sink as he read about how the disease affects the nervous system, causing progressive muscle weakness, loss of coordination, vision impairment, hearing loss and other problems ... If God knew they were right for each other, the Boyntons reasoned, why didn't he warn them that they both were carrying recessive genes that could produce children with Friedreich's ataxia. (Fresno Bee -- Local)
ADA Anniversary Celebration To Be Hel Jul 19, 2007
"I have two sons with Friedreich's ataxia, a degenerative disorder of the peripheral nervous system," said Kelly-McGovern. Both sons - Kieran, 21, and Brendan, 17 - were diagnosed with FA less than a decade ago. (Suffolk Life Newspapers, NY)
Letters to the Editor: June 26 Jun 26, 2007
Friedreich's Ataxia is a rare neurological disorder characterized by a severe lack of balance and coordination problems. I am 25 years old and suffer from this untreatable, debilitating disorder. (Pensacola News Journal)
Reporter Jon Pic is going to the big house Jun 7, 2007
The MDA is edicated to the eradication of the muscular dystrophies, amyotrophic lateral sclerosis (Lou Gehrig's desease), Myasthenia gravis, the spinal muscular atrophies, Friedreich's ataxia and a host of other neuromuscular diseases. The only way to truncate my sentence already a mere hour is to raise money for the MDA. While the hour itself is no great sacrifice on my part, I'd like to raise enough money to perhaps drop the charges altogether. (El Dorado Times, KS)
Quebec case rekindles assisted suicide debate May 17, 2007
May 16, 2007 05:59 PM Les Perreaux Canadian press. MONTREAL The case of a Quebec man accused of helping his sick uncle hang himself is threatening to renew pressure on Ottawa to overhaul Canada's law on assisted suicide. (Toronto Star)
Moonlighting Enzyme Linked To Neurodegenerative Disease Apr 26, 2007
Friedreich's ataxia is one of those diseases few have heard of unless you know someone with the condition ... D., senior author of the study and a basic scientist at Mayo Clinic who specializes in Friedreich's ataxia ... Friedreich's ataxia is an inherited neurodegenerative disease of children and teens and is considered an orphan disease by the National Institutes of Health because of its rarity -- affecting one in 40,000. (Science Daily)
SCRIPPS HOWARD NEWS SERVICE NEWS BUDGET Apr 1, 2007
Now a $100,000 grant in his name will be used to fight Friedreich's ataxia. 650. (Scripps Howard News Wire)
Mercury Toxicity Mar 24, 2007
- disruption of mitochondria function (can lead to heart related issues and Friedreich's Ataxia). - direct affect on ion exchange in a neuron (heart arrhythmias). (Suite101.com)
Santhera Reports Successful 2006 Mar 2, 2007
The results reflect the significant progress that the Company has made across all areas of its business including: - Product development, where the Company is preparing to file the Marketing Authorization Approval (MAA) for its lead compound SNT-MC17 (INN: idebenone) for Friedreich's Ataxia (FRDA) in Europe ... Dr Klaus Schollmeier, Chief Executive Officer, commented: "2006 was a very busy and successful year for Santhera. All our development projects made significant progress, most notably our... (PR Newswire)
Missing woman's body found in stream Nov 13, 2006
Burke, 24, had Friedreich's ataxia, a disease that attacks the nervous system and was last seen at her residence on Nov. 2. Her husband, Ryan Burke, 38, apparently left their house the day after, taking their three children with him to California. (Mail Tribune, OR)
Anxious family fears worst Nov 9, 2006
Candy, who suffers from Friedreich's ataxia, a devastating genetic disease that has ravaged her nervous system and made movement impossible without a walker or wheelchair, thought she had finally found someone who would accept her, family members said. "She was already so sick that she didn't think she could get anyone," said Candy's sister Melanie Dame, who lives in southern Georgia. (Mail Tribune, OR)
Man avoids jail in assisted-suicide case Oct 20, 2006
Ms. Houle had Friedreich's ataxia, an incurable genetic disorder. Relatives said she was racked with spasms, losing her sight and her hearing and refusing food and medication, saying she wanted to die. (Globe and Mail -- National)
Edison Pharma and Institute of Vision Enter Into Collaboration Oct 2, 2006
The company's business is focused on orphan products, which treat diseases that affect fewer than 200,000 individuals in the US. Edison has obtained substantial non-dilutive peer-reviewed support to advance both its pre-clinical and clinical initiatives from foundations and government organizations including the Friedreich's Ataxia Research Alliance, the National Institutes of Health Rapid Access to Interventional Development (RAID) Pilot Program, Cure Huntington's Disease Initiative, Inc.,... (PR Newswire)
Scripps research team reverses Friedreich's ataxia defect in cell culture Aug 22, 2006
The researchers then went on to improve on this molecule by synthesis of novel derivatives, identifying compounds that would reactivate the frataxin gene in blood cells taken from 13 Friedreich's ataxia patients ... "Dr. Gottesfeld's work holds tremendous promise of real therapeutic benefit for Friedreich's ataxia patients," said Ron Bartek, president of Friedreich's Ataxia Research Alliance (FARA) ... Friedreich's Ataxia, a Debilitating Disease. (EurekAlert!)
Patient loses 'right-to-food' case Aug 10, 2006
Mr Burke learned of the court's decision while attending the funeral of his brother in Ireland who died after suffering from the same genetic condition, Friedreich's ataxia. The condition causes lack of coordination, but does not affect mental faculties. (Daily Telegraph)
Patient loses right-to-food fight Aug 9, 2006
Mr Burke, 46, has Friedreich's ataxia. It causes a lack of co-ordination, but does not affect mental faculties. (BBC News -- Health)
Motorcyclists ride for Stephen Aug 1, 2006
Diagnosed with Friedreich's Ataxia at age 12, Siracusa has seen the deterioration of his motor skills and ability to walk during the last 5 years. He awaits an experimental treatment in the country of Mexico scheduled for late August, with the hope his disability will be cured. (Auburn Citizen, NY)
More of this story May 16, 2006
TAUNTON When 16-year-old Tiffany Gambill of Bridgewater was diagnosed with Friedreich's ataxia a disease that affects about one in every 50,000 people in the United States she decided to take action ... "Even though I have Friedreich's ataxia, it does not define me," said Gambill, who is currently a sophomore at the school ... The money she has raised will go to FARA, the Friedreich's Ataxia Research Alliance (www. (The Enterprise, MA)
Crowd packs Backens' funeral Apr 26, 2006
"He lived in the shadow of Friedreich's Ataxia, but more importantly, he lived in the shadow of the cross of Jesus Christ, from which he drew much strength," Paepke said. Noting the single-mindedness - also known as stubbornness - for which Backens was known, Paepke said he never heard Backens speak about his faith without quoting his favorite Scripture, "I can do all things in Christ who strengthens me.". (Rapid City Journal, SD)
Edison Pharma, University of Bologna and Columbia University Medical Center Establish Mitochondrial Disease Partnership Mar 16, 2006
The company has obtained substantial non-dilutive peer-reviewed grant support to advance both its pre-clinical and clinical initiatives from foundations including the Muscular Dystrophy Association, Friedreich's Ataxia Research Alliance, and Seek A Miracle. SOURCE Edison Pharmaceuticals, Inc. Web Site. (PR Newswire)
