eAdvocate - Your Connection to FARA
FARA
Spring, 2008
The following is a snapshot of the full newsletter.
Clinical Trials Update
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. [ More ]
Team Ride Ataxia Completes Cross Country Journey Raising $250,000
Kyle Bryant and a team of 13 cyclists completed a 650 mile cross-country journey to draw attention and raise $250,000 in research funds seeking a cure for Friedreich's ataxia.

Bryant and five of his Ride Ataxia II teammates Sean Baumstark, Linda Johnson, Beth Bax, Sam Bridgman and David "Spinner" Henry – all live with ataxia.

"We gave inspiration to each other and united as a team. The overwhelming feeling among our entire team was that we did something great for ourselves and others," said Bryant. "Some of these people had never ridden much beyond the end of the block but by the end were all accomplished cyclists." [ More ]
President's Message
U.S. Congressman Recognizes FA Awareness Day
The Honorable Robert E. (Rob) Andrews, who represents the First District of New Jersey, has again made a statement in the U.S. House of Representatives recognizing the third Saturday in May as Friedreich's Ataxia Awareness Day in support of all families dealing with FA and those involved in efforts to raise awareness and the funds needed to advance FA research. The congressman's statement refers to the tremendous progress made in FA research since identification of the FA gene, especially to the extremely promising clinical trials now or soon to be underway. Congressman Andrews characterizes FA researchers and families as not only hopeful but confident that these clinical trials will result in our first approved treatments for FA. [ More ]
New FARA Position Open - VP / Chief Executive for Science
FARA is seeking a Vice-President / Chief Executive for Science to work closely with the President, Executive Director, and the Board of Directors to advance the scientific goals of FARA. We are looking for a goal-oriented professional with a commitment to FA research to oversee and enhance our scientific programs and partnerships and to ensure that our strategic research priorities are efficiently and effectively advanced.
In This Issue
  • Featured Articles
  • President’s Message
  • Spotlight
  • FARA Fundraising Across the U.S.
  • FARA Directors & Officers
  • Grants Awarded

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What is Friedreich's ataxia?
Friedreich's ataxia is a life-shortening, debilitating and rare genetic neurodegenerative disorder. Onset of symptoms usually occurs between the ages of 5 and 15. Symptoms include muscle weakness and loss of coordination in the arms and legs; impairment of vision, hearing and speech; aggressive scoliosis (curvature of the spine); diabetes, and a serious heart condition. Most patients need a wheelchair full-time by their late teens or early twenties. There is no cure. Most childhoodonset patients with this disease die in early adulthood. FARA is a 501(c)(3) tax-exempt non-profit organization dedicated to supporting research leading to treatments and a cure for this relentless and devastating disorder.
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the sun never sets on our research - www.CureFA.org
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Friedreich's Ataxia Research Alliance | P.O. Box 1537 | Springfield | VA | 22151

The legacy of Marie Schlau: literature to help cure Friedreich's Ataxia

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!

https://www.amazon.com/Legacy-Marie-Schlau-collective-Friedreichs-ebook/dp/B01N28AFWZ

 

Research projects currently being financed by BabelFAmily

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:

https://www.irbbarcelona.org/en/news/international-patient-advocates-partner-to-fund-spanish-gene-therapy-project-to-treat

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:

https://www.irbbarcelona.org/en/news/new-research-front-to-tackle-friedreichs-ataxia
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.

 

 

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