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Press Releases & News
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A Prom Night Promise
Keeping the FAITH
[ posted on santaclaraweekly.com ]
Making the Best of a Bad Situation
[ posted on www.cdobs.com - the Chicago Daily Observer ]
Request for Applications: Mitochondrial Therapeutic Approaches Research Award sponsored by Friedreich's Ataxia Research Alliance and the Muscular Dystrophy Association
The Friedreich's Ataxia Research Alliance (FARA) and the Muscular Dystrophy Association (MDA) invite proposals, under a competitive Request for Applications (RFA) process, to award a grant focusing on critical issues or hypotheses that advance therapeutic approaches to mitochondrial dysfunction as it relates to neurodegenerative diseases. We anticipate funding one award for two years under this program. The total award is limited to $100,000 (indirect costs cannot exceed 10%) per year for two years.
CLASS ACTS
[ posted on www.centredaily.com | Centre Daily Times - Centre, PA, USA ]
Osceola Mills Elementary School students, including Alex Wilkinson, third from left, participate in a walk-a-thon as a part of Friedreich's Ataxia Research...
The Race Against Time for Friedreich's Ataxia — A true test of endurance
[ posted on www.santaclaraweekly.com ]
Read about Matt Rupel and his yearly fundrasing event called FAITH — Friedreich's Ataxia In The Heart.
Ataxia rider on the attack
[ posted on www.theunion.com | The Union of Grass Valley - Grass Valley, CA, USA ]
Kyle Bryant has endured another lengthy ride to raise funds to battle the Friedreich's ataxia that ravages his body, and he's already talking about another..."
Support Research for Friedreich's Ataxia
[ posted on www.13wham.com | 13WHAM-TV - Rochester, NY, USA ]
Tammy Luebbel of the Friedreich's Ataxia Research Alliance said, "It's a neuromuscular disease that falls under the umbrella of the Muscular Dystrophy..."
John Luth and Randy Mann Ran the Boston Marathon in Support of Their Friend
Reverend John Luth and Randy Mann ran the Boston Marathon on April 21st in support of FARA and their friend Joel Kleine. Most of the funds were raised through pledges and gifts from members of the Christian Reformed Church in St. Albert, Alberta Canada. The local paper did a story on the run and on Joel's race against Friedreich's.
eAdvocate Spring Issue
Like everyone in the FA community, FARA is excited about the extremely promising clinical trials that are currently under way or on our doorstep. One such trial is now ongoing while another is expected to begin recruiting patients in late May and others should open later this year. FARA and FA scientists remain confident that these clinical trials will result in the first approved treatments for FA and will begin building the combined or "cocktail" therapy that we all anticipate.
Congressman Andrews FA Awareness Day Resolution
Madam Speaker, I rise today in support of Friedreich's Ataxia Awareness Day, which is recognized each year on the third Saturday in May. Friedreich's ataxia is a life-shortening neurological disorder that is usually diagnosed in childhood. It causes muscle weakness and loss of coordination in the arms and legs; impairment of vision, hearing and speech; scoliosis, diabetes; and a life-threatening heart condition.
New FARA Position: VP / Chief Executive for Science
FARA is seeking a Vice-President / Chief Executive for Science to help advance their scientific goals. Key responsibilities include: Chairing the FARA Scientific Advisory Board, Overseeing the FARA Grant Program, and Serving as FARA Scientific Ambassador to the larger research community.
[ More ]
2008 Kyle Bryant Translational Research Award
The Friedreich's Ataxia Research Alliance (FARA) and the National Ataxia Foundation (NAF) invite proposals, under a competitive Request for Applications (RFA) process, to award a grant focusing on pre-clinical and clinical investigations...
2008 NY Emmy Win!
The Keeping Kids Healthy Friedreich's Ataxia segment on PBS featuring the Bode / Caruso family, the Orth family, and the Simpson family won the New York Emmy for Health / Science Program / Special. The show will air on channel Thirteen / WNET in New York on Friday, May 2 at 2:30 pm and Saturday, May 3 at 6:30 am. Click to learn more about the program.
Sean Baumstark Participated in the Olympic Torch Relay
Sean Baumstark, co-organizer of Ride Ataxia II, was selected to participate in the passing of the Olympic Torch in San Francisco on Wednesday, April 9. 536 people applied to carry the torch, and Sean was one of the thirty-five chosen in San Francisco.
Click on the following links to read and view press coverage:
http://www.nbc11.com/newsarchive/15795809/detail.html
http://cbs13.com/video/?id=32165@kovr.dayport.com
Cyclists Bring Attention to Disabling Disease — Friedreich's Ataxia
[ KLAS-TV - Las Vegas, NV ,USA ]
March 27, 2008 — Among the cyclists, a young man named Kyle Bryant, who isn't letting Friedreich's ataxia slow him down. Bryant led the way, as 21 cyclists pedaled up to the...
Cyclist with Rare Neuromuscular Disorder to Arrive in Las Vegas March 27 Following Cross-Country Journey
March 20, 2008 — Kyle Bryant and a team of 15 cyclists will arrive at the Las Vegas Flamingo Hotel, North Tour Lobby Entrance, Thursday March 27 at noon, completing a 600+ miles cross-country journey to draw attention and raise research funds to find a cure for the rare neuromuscular disorder Friedreich's ataxia.
[ More ]
Living — and Riding — with Friedreich's Ataxia
[ posted on News10.net - Sacramento, CA, USA ]
March 10, 2008 — The riders are headed to the national Friedreich's Ataxia convention in Las Vegas, where leading specialists will discuss the latest efforts in fighting the...
Cyclist with Rare Neuromuscular Disorder to Begin Second Cross-Country Journey from Sacramento
March 10, 2008, Sacramento — Sacramento native Kyle Bryant and a team of 35 riders will leave from the California state capitol Saturday at 9 a.m. to begin a cross-country journey to draw attention and raise research funds to find a cure for the rare neuromuscular disorder Friedreich's ataxia.
[ More ]
Phase III Idebenone Recruitment
January 3, 2008 — We are pleased to be able to announce today that Santhera Pharmaceuticals is now recruiting patients with Friedreich's Ataxia in the United States, for a Phase III clinical research trial looking at the effects of idebenone on the nervous system and the heart. We are looking for patients between the ages of 8 and 17 years who have been diagnosed with Friedreich's Ataxia.
[ More ]
Cyclist with Rare Neuromuscular Disorder to Begin Second Cross-Country Journey
January 3, 2008 — Kyle Bryant and Team Ride Ataxia are preparing to begin their second cross-country journey to draw attention and raise research funds to find a cure for the rare neuromuscular disorder Friedreich's ataxia with which Bryant and other teammates are affected.
[ More ]
FARA Partners with American Heart Association to Establish Cardiology Research Award
December 1, 2007 — Friedreich's Ataxia Research Alliance (FARA) has partnered with the AHA to establish a research award for investigators conducting research related to Friedreich's Ataxia and cardiology. The award supports basic, clinical, population, or translational research relevant to the causes or treatment of cardiology diseases in Friedreich's Ataxia patients. In November, a FARA-AHA agreement was signed that will find the two organizations working closely together to solicit and fund research most likely to lead to a better understanding of FA-related cardiology and effective treatment of the condition. Such research is crucial for the better understanding and effective treatment of the cardiomyopathy involved in Friedreich's Ataxia.
[ More ]
Ride Ataxia II
Ride Ataxia II will begin on March 15, 2007 in Sacramento, CA and conclude in Las Vegas, NV on March 27, 2007. It will be a 13 day trip covering 600+ miles. You are invited to participate in all or part of the ride. [ More ]
New FARA Position
FARA is looking for an Executive Assistant / Program Manager. The position is responsible for providing executive administrative support for FARA operations and programs. [ More ]
Cernosek Family (Crofton, MD) and WASH-FM 97.1 Staff Members Help Raise Money
October 31, 2007 — The Cernosek Family, of Crofton, MD and staff members from local radio station WASH-FM 97.1 helped raise money for FARA at their first annual fund raising event at the Front Page in Arlington, VA on October 11th 2007. The Cernoseks' youngest son, John, has been diagnosed with FA. The "happy hour," complete with auction and raffle, raised $1,000 over expectations. Check out the website to see photos of the event. [ More ]
Santhera Announces Start of US Phase III Clinical Trial
September 29, 2007 — Santhera Pharmaceuticals, a Swiss specialty pharmaceutical company focused on neuromuscular diseases, announced today that it has reached an agreement with the US Food and Drug Administration (FDA) under the Special Protocol Assessment (SPA) procedure relating to the Phase III clinical trial to evaluate SNT-MC17 (INN: idebenone) for the treatment of Friedreich's Ataxia (FRDA). The protocol incorporates advice provided by the FDA on the design of the study, its endpoints, statistical analysis and conduct. The FDA granted a fast track designation to Santhera's compound in FRDA. [ More ]
Pittsford Sisters Hoping for a Cure for Their Rare Disease
[ posted on www.whec.com, News 10 NBC - Rochester, NY, USA ]
August 30, 2007 — The Ferrarone sisters have a rare genetic disease called Friedreich's Ataxia. By the time she was six, Sara was having trouble skipping and balancing... [ More ]
EDS Foundation Awards $40,000 Grant to Friedreich's Ataxia Research Alliance
June 26, 2007, 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.
[ More ]
Community Rallies Around South Burlington Resident
[ posted on burlingtonfreepress.com ]
June 21, 2007 — Read about how the South Burlington, VT community is rallying around a charismatic person with FA.
Kyle Bryant $100,000 Award to Australian / UK Collaboration to Test Possible Friedreich's Ataxia Antioxidant Treatment in Mouse Model
June 18, 2007 — 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).
[ More ]
Dr. Arnold Munnich and Dr. Ioav Cabantchik Published and Announced the Results of Their Phase I/II Study of Deferiprone
May 2007 — Friedreich's ataxia researchers Dr. Arnold Munnich from the Medical Genetic Clinic and Research Unit at Inserm in Paris, France and Dr. Ioav Cabantchik from the Hebrew University in Jerusalem, Israel have published and announced, in this press release, the results of their phase I/II study of deferiprone. Drs. Munnich and Cabantchik reported initial findings at the 3rd International Friedreich's Ataxia Scientific Conference in November 2006, Bethesda MD. A more detailed a full report appears in their publication titled "Selective iron chelation in Friedreich ataxia. Biological and clinical implications" in the journal Blood, Mar 2007.
As the press release indicates ApoPharma Inc, is planning a follow-up phase II trial of deferiprone. At this time ApoPharma has not disclosed the full details of the study design of the upcoming phase II trial. However, FARA remains in close contact with representatives from ApoPharma and as soon as the trial details are available we will share it here on our Web site.
In the meantime, the single most important action you can take to help prepare for all future trials is to help FARA get all FA patients registered in the FARA Patient Registry. Keeping this registry up to date enables clinical trials to be successful in the shortest amount of time possible.
As more information becomes available, we will post it here on our Web site, send out e-bulletins when needed, and make sure that all those patients registered on the FARA Patient Registry are notified of clinical trials for which they are eligible.
[ More ]
Assistance Dog Provides Learning Situation for All
[ posted on www.toledoblade.com ]
May 31, 2007 — This article talks about Zane, a two-year-old black Labrador retriever, who assists Zac at school.
[ More ]
Community Champions: EDSers Help Young People Afflicted with Neuromuscular Disease
May 15, 2007 — 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. Margaret Ferrarone, an EDS Applications Human Resources business partner in Rochester, N.Y., is hopeful that research will slow the disease's progression and ultimately, find a cure.
[ More ]
The Mothers and Daughters of The Cake Eaters
[ posted on www.huffingtonpost.com ]
May 11, 2007 — Mary Caruso discusses how she and her daughters, Sam & Alex, assisted Mary Stuart Masterson with her film The Cake Eaters. In the film, one of the main characters has Friedreich's Ataxia.
[ More | Sam & Alex's Page ]
Sign an Online Petition to Support Sam & Alex with Their Extreme Makeover: Home Edition Application
April 28, 2007 — Sam and Alex have submitted an application to Extreme Makeover: Home Edition, hosted by ABC. The house they live in was built in 1890 and
their mother, Mary, has struggled with the support of others to make the house
accessible for the girls. It has been a major struggle monetarily and
emotionally. The winters are very hard on the girls; the
heating system is not sufficient and there are holes in the walls, as well as
horrible roof leaks. There is no garage, so to get in to the house they need to
use a ramp outside. Rain, snow, and ice are a major concern. Jack and I are starting by signing this petition and donating an elevator to ABC if they
are chosen. Thank you for your time and concern!
[ Sign the Online Petition | Sam & Alex's Page ]
Moonlighting Enzyme Linked To Neurodegenerative Disease
[ posted on sciencedaily.com; April 25, 2007 ]
Repligen Licenses Potential Treatment for Friedreich's Ataxia from The Scripps Research Institute
April 11, 2007, Springfield, VA — Repligen Corporation (NASDAQ: RGEN) announced today that it has entered into an exclusive commercial license with The Scripps Research Institute for intellectual property covering compounds, which may have utility in treating Friedreich's ataxia. The Scripps research was funded in part by grants from the Friedreich's Ataxia Research Alliance (FARA). [ More ]
He Rolled Past Pain to Fight Disease
[ posted on www.sacbee.com — reg req'd ]
March 30, 2007 — Kyle Bryant is interviewed by the Sacramento Bee about his cross-county bike ride and some of the pain he fought threw along the way. [ More ]
Friedreich's Ataxia is a Rare Disease, But Its Patients Press On
[ posted on www.commercialappeal.com — reg req'd ]
March 24, 2007 — Kyle Bryant is interviewed by a local Memphis newspaper as he reached his destination after a 2,800 mile cross-country bike ride to raise awareness and funds. [ More ]
The Kyle Bryant Translational Research Award Sponsored by Kyle Bryant / Ride Ataxia, Friedreich's Ataxia Research Alliance (FARA) and the National Ataxia Foundation (NAF)
March 22, 2007 — FARA and NAF invite proposals, under a competitive Request for Applications (RFA) process, to award a grant focusing on pre-clinical investigations that will facilitate clinical trials for Friedreich's Ataxia. We anticipate funding one award
for one year under this program. The total award is limited to $100,000 (direct costs only). [ Download the Application on the Grant Program Page ]
Santhera Provides Updates on Idebenone Trials in U.S. and Europe [ PDF ]
February 2, 2007 — The drug company Santhera has posted these press releases and FARA remains in close contact for further updates. At this time Santhera has not disclosed the full details of the study design of the upcoming phase III trial in the U.S. However, as indicated in the press release issued by Santhera, the protocol will reflect the major findings from the 6-month collaborative clinical trial with the NIH regarding neurological endpoints and dosing of SNT-MC17/idebenone. As soon as the specific inclusion criteria for participation in this study as well as the number of patients involved are disclosed, we will share it here on our Website.
In the meantime, the single most important action you can take to help prepare for all future trials is to help FARA get all FA patients registered in the FARA Patient Registry. Keeping this registry up to date enables clinical trials to be successful in the shortest amount of time possible.
As more information becomes available, we will post it here on our Website, send out e-bulletins when needed, and make sure that all those patients registered on the FARA Patient Registry are notified of clinical trials for which they are eligible. [ More: U.S. and Europe ]
Cross-Country Cyclist with Rare Neuromuscular Disorder to Pedal through Phoenix
January 30, 2007 — Kyle Bryant is in day 9 of a 2,800-mile bike ride to raise awareness and research funds to help find a cure for the rare neuromuscular disorder, Friedreich's ataxia (FA), with which he and thousands of other Americans are affected. [ More ]
Pix from The Voyces Friedreich's Ataxia Benefit
January 22, 2007 — Jude Kastle and Brian Wurschum of The Voyces play a benefit concert at Rockwood Music Hall in Manhattan, NY, NY. [ More ]
Grandparents Get Involved with Fundraising
January 19, 2007 — Some concerned grandparents recently made a decision to step up to the plate and raise money for research to help their grandchildren with Friedreich's ataxia. Leonard and Gail Miller of Jamestown, PA began a very successful letter writing campaign that to date has brought in nearly $4200 to help find a cure for their granddaughter, Kasey of Norwood, MA. [ More ]
2006 Press Releases & News
Shawnee Student Gets Wish Granted
[ posted on news.enquirer.com ]
December 8, 2006, Cincinnati, OH — The school kept the rally secret, and that only added to the building excitement for the 10-year-old, who suffers from Friedreich's Ataxia - a rare, life...
His Wish Granted, Boy Gets School Send-off
[ posted on news.enquirer.com ]
November 30, 2006, Cincinnati, OH — His wish granted, boy gets school send-off...
International Friedreich's Ataxia Conference at NIH Highlights Promising Research, Clinical Trials and the Importance of Public-Private Partnership
November 16, 2006 — The Friedreich's Ataxia Research Alliance (FARA) and the National Institutes of Health (NIH) have just hosted the Third International Friedreich's Ataxia (FRDA) Scientific Conference at the NIH in Bethesda, Maryland, highlighting and advancing the exciting research leading now to a variety of clinical trials that show promise of developing treatments for this devastating disorder. [ More ]
Frank Wootten to Cycle Coast-to-Coast to Raise Awareness and Research Money for His Son's Friedreich's Ataxia
November 14, 2006 — Frank Wootten of Hooksett, NH will ride his bicycle from St. Augustine, FL to the Scripps Research Institute in La Jolla, CA next month to raise awareness and research funds to help find a cure for his son's Friedreich's Ataxia, a devastating neurodegenerative disease. [ More ]
NIH and Santhera Announce Positive Results of Study with SNT-MC17/idebenone in Friedreich's Ataxia (FRDA) [ PDF ]
November 13, 2006, Bethesda, Maryland, USA, and Liestal, Switzerland — The US National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) presented results of their recently completed clinical trial with SNT-MC17/idebenone in Friedreich's Ataxia (FRDA). Data were presented by Dr. Nicholas Di Prospero at the 3rd International Scientific Friedreich's Ataxia Conference in Bethesda, MD, on November 10 to 12. [ More ]
Rare Disease, but Journey Awaits
[ posted on www.sacbee.com — registration required ]
November 6, 2006 — Kyle Bryant plans a 2,700-mile ride to raise awareness of Friedreich's ataxia. [ More ]
Visit Kyle's Web site: www.rideataxia.org
When Cells Stop Working
Children keep dying from mysterious illnesses that have been traced to tiny structures called mitochondria
[ posted on www.time.com ]
November 6, 2006 — Time magazine article discusses the importance of mitochondria in many diseases. Friedreich's ataxia is caused by a genetic defect that prevents adequate production of the protein frataxin which is essential for proper functioning of mitochondria, the energy producers for cells. The article mentions Edison Pharmaceuticals which is doing research funded by FARA. [ More ]
Laura Ferrarone Honored as a Young Rochester Woman of the Year
November 6, 2006 — "Laura Ferrarone is a leader within our school and community. As a student with Friederich's Ataxia, she has helped to inspire and promote a school-wide and
community level initiative to raise money for research... [ More ]
FARA and NIH to Co-Host 3rd International Friedreich’s Ataxia Research Conference
October 24, 2006 — The Friedreich’s Ataxia Research Alliance (FARA) and the National Institutes of Health (NIH) will collaborate to fund, organize, and co-host the Third International Friedreich's Ataxia (FRDA) Scientific Research Conference at the NIH in Bethesda, Maryland, outside Washington, D.C., on November 10, 11 and 12, 2006. [ More ]
 Actress Mary Stuart Masterson Hosts Local Friedreich’s Ataxia Fundraiser
September 22, 2006, Branford, CT — Actress Mary Stuart Masterson recently hosted a fundraiser at the Owenego Inn in Branford, Ct., on behalf of Samantha and Alexandria Bode, to help find a cure for Friedreich's ataxia. [ More ]
 Actress Mary Stuart Masterson to Host Local Friedreich’s Ataxia Fundraiser
August 31, 2006, Branford, CT — Actress Mary Stuart Masterson will host a fundraiser at 6 PM on Friday, September 22, 2006 at the Owenego Inn in Branford, to help find a cure for Friedreich’s ataxia, a devastating neurological disease. Outback Steakhouse will prepare and donate all food for the event. Local "celebrity" waiters will serve the 300 guests. [ More ]
Scripps Research Team Reverses Friedreich's Ataxia Defect in Cell Culture
[ English | Espańol | Italiano ]
August 20, 2006, La Jolla, CA — A team from The Scripps Research Institute and the University of California School of Medicine has developed compounds that reactivate the gene responsible for the neurodegenerative disease Friedreich's ataxia, offering hope for an effective treatment for this devastating and often deadly condition.
Raytheon Support Group Helps Match Service Dog Shadow with 9-Year-Old Donovan [ PDF ]
August 2006
A Molecule That Binds GAA-TCC Triplet Repeat DNA Increases Frataxin Protein in Patient Cells
July 21, 2006 — Scientists at The Scripps Research Institute, The California Institute of Technology (Caltech) and Texas A & M University Health Science Center have reported that a synthetic molecule that binds the expanded GAA-TCC repeat sequences in the gene associated with Friedreich's ataxia (frataxin) increases expression of this gene in a cell line derived from a Friedreich's patient, with a corresponding increase in frataxin protein. [ More ]
Friedreich's Ataxia Patient Raising Funds for Research
[ posted on www.wtoctv.com, WTOC - Savannah, GA, USA ]
July 21, 2006 — If you'd like to contribute, donations go to FARA, Friedreich's Ataxia Research Alliance, c/o Lindsey Ashman, 14851 Honeysuckle Road, Savannah, GA 31419.
Friedreich's Ataxia Research Alliance Announces Support from NIH RAID Pilot Program
July 13, 2006, Washington, D.C. — The Friedreich's Ataxia Research Alliance announced today that the National Institutes of Health has accepted the University of Pennsylvania and Edison Pharmaceuticals into the Rapid Access to Interventional Development (RAID) Pilot Program for the development of Edison Pharmaceuticals EPI-A0001 for Friedreich's ataxia.
[ More ]
Kyle Bryant to Pedal Cross Country to Support Friedreich's Ataxia Research
[ posted on www.theunion.com ]
June 30, 2006 — Also, visit Kyle's Web site: www.rideataxia.org.
Tributes to Claude St-Jean
June 28, 2006 — Claude St-Jean, founder of ACAF, the Canadian Association of Hereditary Ataxias, died June 13, 2006. Mr. St-Jean dedicated his life to finding a cure for Friedreich's ataxia after being diagnosed with the disorder. Much of the early scientific research into Friedreich's ataxia can be credited to the efforts of Mr. St-Jean and his colleagues.
[ More ]
MDA and FARA to Accelerate Friedreich's Ataxia Research
June 19, 2006, Tucson, Arizona — The Muscular Dystrophy Association (MDA) and the Friedreich's Ataxia Research Alliance (FARA) announced today that they will accelerate their joint efforts to combat Friedreich's ataxia, a devastating neuromuscular disorder affecting both children and adults.
[ More ]
EDS and RIT Partner to Develop Solution for Friedreich's Ataxia Research
June 8, 2006 — 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.
[ More ]
Time for Giving
[ posted on www.onlineathens.com — registration required ]
June 7, 2006 — 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.
[ More ]
One Mom’s Search for a Cure [ article and video ]
[ posted on www.13wham.com, 13WHAM-TV - Rochester, NY, USA ]
May, 2006 — ...Evan has a condition called Friedreich's Ataxia (FA), a rare neuromuscular genetic disease that affects balance and coordination... Promising Clinical Trials Fuel Preparations for "Friedreich's Ataxia Awareness Day" — May 20, 2006
May 8, 2006, 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.
[ More ]
Fundraisers Party to Help Friedreich's Ataxia Group
[ posted on www.onlineathens.com — registration required ]
May 3, 2006 — Fundraisers party to help Friedreich's Ataxia group 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.
[ More ]
Kentucky Legislator Plans to Spend More Time with Grandson with Friedreich's Ataxia Following Retirement
[ posted on news.kypost.com
on April 20, 2006 ] Important Step Closer to Clinical Trial for Promising Compound [ PDF ]
April 4, 2006 — An announcement that the Food and Drug Administration (FDA) has granted Edison Pharmaceuticals orphan drug status for its very promising compound is very good news for the Friedreich's ataxia community. The Edison compound, referred to as EPI-A0001, has shown in cell cultures the ability to increase significantly the mitochondria's production of energy and to decrease oxidative stress significantly. The FDA's granting of orphan drug status should facilitate and accelerate the compound's movement through the preclinical steps needed to prepare for the human clinical trial being planned to begin before the end of this year. Those steps include animal tests to establish a "safety profile" and to demonstrate that the compound passes the "blood-brain barrier." FARA is hopeful that the FDA decision will also facilitate NIH support for taking those preclinical steps as promptly as possible so as to keep the clinical-trial plans on track and on schedule.
[ More ]
Kentucky Adopts Friedreich's Ataxia Awareness Day 2006 Resolution [ PDF ]
March 20, 2006 — Kentucky has adopted a Friedreich's Ataxia Awareness Resolution which was introduced by State Representative Paul H. Marcotte. In making the resolution, he said "In honor of my 10-year-old grandson, Zachary, who has Friedreich's Ataxia, I move that it be adopted." Senator Richard Roeding passed a similar resolution in the State Senate.
[ More ]
Idebenone Phase II Trial Reaches Midpoint at National Institutes of Health
February 17, 2006, Washington, D.C. — National Institutes of Health (NIH) researcher Dr. Nicholas Di Prospero has reported that his team has reached the midpoint of its phase II clinical trial of Idebenone at the National Institute of Neurological Disorders and Stroke (NINDS).
[ More ]
Austrian Lab Supported by FARA Publishes Exciting Findings — Drug Increases Frataxin Protein Levels Two to Five Fold in Cells from Friedreich's Ataxia Patients
February 7, 2006 — ABSTRACT, BACKGROUND: Friedreich's ataxia (FRDA) is a neurodegenerative disorder caused by decreased expression of the protein frataxin, recently described to be an iron chaperone for the assembly of iron-sulphur clusters in the mitochondria, causing iron accumulation in mitochondria, oxidative stress and cell damage. Searching for compounds that could possibly influence frataxin expression, we found that the cytokine recombinant human erythropoietin (rhuEPO) significantly increases frataxin expression by a still unknown mechanism.
[ More ]
2005 Press Releases & News
Santhera Starts European Phase III Study with Its Lead Compound SNT-MC17 (idebenone) in Friedreich’s Ataxia [ PDF ]
December 15, 2005, Liestal, Switzerland — Santhera Pharmaceuticals AG ("Santhera"), a Swiss-based biopharmaceutical company focused on neuromuscular diseases, announced today that it has started a European Phase III clinical study with its lead product SNT-MC17 (idebenone) in Friedreich’s Ataxia (FRDA). The design of this study reflects the company’s discussions with EMEA which took place earlier this year and will evaluate both the cardiac and neurological benefits of SNT-MC17 (idebenone).
[ More ]
Student to Run Saharan Desert Race to Benefit Friedreich's Ataxia Research Alliance
[ posted on www.dailyillini.com
— December 13, 2005 Issue ]
You can sponsor Peter and learn more about why he's running.
Friedreich's Ataxia Research Alliance (FARA) Awards Edison Pharmaceuticals $3 Million Development Grant
November 8, 2005, 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.
[ More ]
Santhera and the NIH Collaborate to Evaluate SNT-MC17 in Friedreich’s Ataxia [ PDF ]
November 3, 2005, Liestal, Switzerland — Santhera Pharmaceuticals AG of Switzerland announced today the start of a collaborative clinical trial with the U.S. National Institutes of Neurological Disorders and Stroke (NINDS) at the National Institute of Health (NIH) to evaluate SNT-MC17 (idebenone) in patients affected by Friedreich’s ataxia (FRDA), a devastating life-threatening neuromuscular disease.
[ More ]
Friedreich’s Ataxia Research Alliance (FARA) Joins with MDA and Seek A Miracle in
Fighting Friedreich’s Ataxia
October 25, 2005, Washington, D.C. — The Friedreich’s Ataxia Research Alliance (FARA) has awarded a $300,000 grant to Edison Pharmaceuticals in the first step of an ongoing collaboration with the Muscular Dystrophy Association (MDA), and Seek A Miracle (SAM), intended to move promising compounds for the treatment of neuromuscular diseases from the lab to the clinic.
[ More ]
LSU Researcher Receives NIH Grant to Study Causes of Friedreich’s Ataxia
October 20, 2005, New Orleans — Louisiana State University Health Sciences Center researcher Ed Grabczyk has been awarded a $485,000 grant from the National Institutes of Health for a three-year study designed to better understand the mechanisms causing Friedreich’s ataxia (FRDA) and provide clues for possible therapies.
[ More ]
NINDS Recruiting Patients for Phase 2 Idebenone Study
September 28, 2005 — The National Institute of Neurological Disorders and Stroke (NINDS) at NIH is recruting patients for a six month double-blind... [ More ]
U.S. Congressman Danny K. Davis Introduces Movement Disorders Awareness Month Resolution
July 28, 2005 — Expressing the sense of the House of Representatives that observing a Movement Disorders Awareness Month would promote awareness, diagnosis, and advocacy concerning the issue.
[ More ]
Louisiana Adopts Friedreich's Ataxia Awareness Day
May 20, 2005 — The Louisiana State Legislature has passed a resolution proclaiming the third Saturday in May annually as Friedreich's Ataxia Awareness Day.
[ More ]
Making Strides
[ posted on www.ocregister.com
— free registration required ]
May 20, 2005, Orange County, CA — Chelsea and Sandy Lane discuss their family's efforts to raise funds for Friedreich's ataxia research.
"Exciting Scientific Advances" Trigger Hope on "Friedreich's Ataxia Awareness
Day" — May 21, 2005
May 13, 2005, Washington, D.C. — Although there is no effective treatment or cure available, Friedreich's Ataxia patients and families have more reason for real hope as they prepare events around the country for "Friedreich's Ataxia Awareness Day" on May 21st. The day is recognized in a Congressional proclamation and through various events around the country. Friedreich's Ataxia is a fatal, hereditary, degenerative, neurological disease that typically first becomes noticeable when children are in elementary school.
[ More ]
5K Race Will Target 8-year-old's Disease
[ posted on news.enquirer.com ]
April 1, 2005, Cincinnati, OH — Tammy Luebbe discusses her efforts to sponsor a 5K race on behalf of her 8-year-old son Evan and other children who have Friedreich's ataxia.
Kentucky Adopts Friedreich's Ataxia Awareness Day 2005 Resolution [ PDF ]
March, 2005 — Kentucky has adopted a Friedreich's Ataxia Awareness Resolution. (H.R. 70) which was introduced by State Representative Paul H. Marcotte. In making the resolution, he said "In honor of my 9-year-old grandson, who has Friedreich's Ataxia, I move for passage." Senator Richard Roeding passed a similar resolution in the State Senate.
[ More ]
2004 Press Releases & News
Friedreich’s Ataxia Research Alliance Research Grants Reach $2-million Mark
December 15, 2004, Arlington, Virginia — The Friedeich’s Ataxia Research Alliance (FARA) has
awarded about $1 million in research grants in 2004, bringing the total grants awarded to $2 million since
FARA was established in 1998. This research is targeted at scientific efforts to find ways to slow, stop
and reverse progression of Friedreich’s ataxia. [ More ]
Researcher Targets DNA Replication for Better Understanding of Friedreich’s Ataxia
October 21, 2004, Chicago, Illinois — Maria Krasilnikova, a research assistant professor at University of Illinois
at Chicago, is studying the underlying DNA replication of Friedreich’s Ataxia to help in the search for
new drugs to treat the disorder. [ More ]
May 15, 2004 — Friedreich's Ataxia Awareness Day [ Rep. Andrews' Statement & Rep. Marcotte's Statement ] [ PDF ]
Explosion of Research Triggers Hope on "Friedreich’s Ataxia Awareness Day" — May 15
May 6, 2004, Washington, D.C. — Although there is no effective treatment or cure available, Friedreich’s
ataxia patients and families have more reason for real hope as they prepare events around the country on
"Friedriech’s Ataxia Awareness Day," May 15th. The day is recognized in a Congressional proclamation
and various events around the country. [ More ]
All-volunteer IT Coalition Builds Computer Network Critically Needed for Friedreich’s Ataxia Medical Research
January 24, 2004, Washington, D.C. — It’s called FACE IT or the Friedreich’s Ataxia Clinical Enterprise
(FACE) IT Program, and it may someday result in the saving of lives of Friedreich’s ataxia patients.
[ More ]
Scientists Herald Beginning of the "Treatment Era" for Friedreich's Ataxia
January 19, 2004, Washington, D.C. — Researchers from around the world are collaborating in making
real progress they hope will lead first to helpful treatments and then to more curative therapies for
Friedreich's ataxia, a rare, degenerative, neurological disease that puts its victims in wheelchairs and often
leads to death in early adulthood. The latest research is detailed in the current issue of the FARA Update
highlighting an international conference that brought together 100 top researchers from around the world.
[ More ]
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