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Latest news on Friedreich's Ataxia research
Updated results from clinical trials and research initiatives
Friedreich's Ataxia fundraising activities and staying in touch
Participate and stay informed about our fundraising events. Take part in our Facebook community with FA patients, relatives, researchers and friends from all around the world!
FARA is working with Dr. Zesiewicz to get additional information out to the FA community about this upcoming study as the appropriate regulatory approvals are obtained and publications of data are approved for release. FARA will provide information on the website and patient registry site as soon as necessary approvals are received.
The posting on clinicaltrials.gov was released prior to regulatory approval of the study. The study cannot begin or start recruitment until regulatory approval is granted. We recommend that you wait to contact the study sites until the necessary approvals are in place as there is little information that the study investigators can provide you at this time.
We do not recommend that individuals with FA try Chantix® now. We strongly encourage people to wait for the upcoming trial and until we have additional safety data and understand how this drug might be working.
Chantix® is a drug approved for smoking cessation so all studies and available public data are related to smokers. Chantix® works on nicotinic receptors in the brain.
· There are no safety data on people under 18, the ages where it is known that the brain is undergoing many developmental changes. No one under 18 should take Chantix® until its effect on adolescent brains is known.
· Based on clinical studies in smokers, Chantix® is not recommended for anyone with diabetes or clinically significant (taking meds for) heart involvement.
· There are no published long-term safety data on Chantix®--no one has been on it for longer than a year, and the typical smoking cessation course of use is much shorter than that. It has not been tested nor do we have experience with it as a drug for chronic use as yet.
· We have no data on side-effects or outcomes information on Chantix® use in non-smokers.
· There are additional side effects of Chantix®.
* 50% of users experience significant nausea
* Vivid dreaming
* Suicide/depression. This is an important area considering the struggle FA patients sometimes have in dealing emotionally with their FA. There are questions of whether the reported elevated-from-the-normal suicide rate of Chantix® users is due to the drug or a symptom of smoker withdrawal.
Again, FARA is working closely with the clinical research team to advance this project expeditiously. FARA will post here and on the FARA website and FARA patient registry site additional information as it is made available to us. FARA is grateful for your generosity that enables our support of these important clinical research efforts and for the continued participation in the research projects by patient families, without which no real progress would be possible.
Ronald J. Bartek
Friedreich's Ataxia Research Alliance (FARA)
P. O. Box 1537
Springfield, VA 22151
Tel (703) 426-1576
FARA website: http://www.CureFA.org
Please register in the FARA Patient Registry at http://www.curefa.org/registry/
and for e-news at http://visitor.constantcontact.com/email.jsp?m=1101190303489
If you feel like reading an unputdownable novel while collaborating with a just and solidary cause, "The Legacy of Marie Schlau" is your book! 100% of all funds raised will be dedicated to medical research to find a cure for Friedreich's Ataxia, a neurodegenerative disease that affects mostly young people, shortening their life expectancy and confining them to a wheelchair.
The life of Marie Schlau, a German Jewish girl born in 1833 hides great unsolved mysteries: accidents, disappearances, enigmas, unknown diagnoses, disturbing murders, love, tenderness, greed, lies, death ... alternatively a different story unfolds every time and takes us closer to the present. Thus, there are two parallel stories unravelling, each in a different age and place, which surprisingly converge in a revelatory chapter.
Paperback and Kindle versions for "The legacy of Marie Schlau" available for sale at Amazon now!
Currently, BabelFAmily is financing two promising research projects aimed at finding a cure for Friedreich's Ataxia. Whenever you make a donation to us or purchase a copy of "The legacy of Marie Schlau", this is where all funds raised will be devoted to:
1) Gene Therapy for Friedreich's Ataxia research project:
The project is the result of an initiative of Spanish people affected by this rare disease who are grouped in GENEFA in collaboration with the Spanish Federation of Ataxias and the BabelFAmily. The Friedreich’s Ataxia Research Alliance (FARA), one of the main patients’ associations in the United States now joins the endeavour.
2) Frataxin delivery research project:
The associations of patients and families Babel Family and the Asociación Granadina de la Ataxia de Friedreich (ASOGAF) channel 80,000 euros of their donations (50% from each organisation) into a new 18-month project at the Institute for Research in Biomedicine (IRB Barcelona). The project specifically aims to complete a step necessary in order to move towards a future frataxin replacement therapy for the brain, where the reduction of this protein causes the most damage in patients with Friedreich’s Ataxia.
The study is headed by Ernest Giralt, head of the Peptides and Proteins Lab, who has many years of experience and is a recognised expert in peptide chemistry and new systems of through which to delivery drugs to the brain, such as peptide shuttles—molecules that have the capacity to carry the drug across the barrier that surrounds and protects the brain. Since the lab started its relation with these patients’ associations in 2013*, it has been developing another two projects into Friedrich’s Ataxia.