Words cannot even begin to describe the sadness we feel and how much we will miss Keith.  As much as Keith was our inspiration to found FARA, his legacy is our continuing dedication to FARA and our overwhelming commitment to find a treatment or a cure for all of our children with Friedreich's ataxia.  It was Keith's wish that memorial donations be made to FARA, P. O. Box 1537, Springfield, VA  22151.
At Keith's request his tissues and organs are being donated to the FA research repository lab of Dr. Arnulf Koeppen.  Dr. Koeppen uses these tissues and organs for his research and makes them available to FA researchers around the world.
Keith's memorial service will be held Saturday, January 30, 2010, at 11 am at St. Matthew's Methodist Church, 8617 Little River Turnpike; Annandale, VA 22003-3604.
We wish to thank the many families and friends who have provided our family with kindness, prayers, and encouragement.

Friedreich's Ataxia Research Alliance (FARA)
P. O. Box 1537   Springfield, VA  22151
Tel (703) 426-1576; http://www.CureFA.org
FA Patient Registry: http://curefa.org/registry/
E-Bulletin Sign-up:  http://curefa.org/news/index.asp
VIEW THE LATEST NEWSLETTER, The Advocate
http://www.curefa.org/newsletter/newsletter_2009-2010_winter.pdf

 

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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