Authors on Friedreich’s Ataxia – Susan Allen Carter

 

Ernest / December 21 2014

by Michell Spoden

 

Susan Allen Carter is a forty-year-old mental health counselor from the United States and is part of literacy project with Authors on Friedreich’s Ataxia series.

Michell: There is something similar with each of the writers for this project. What is that?

Susan: Each contributing writer has personally been affected by FA. The majority are diagnosed personally with FA. Because of this in depth connection to FA, the authors are able to present a firsthand insight to the characters of the novel. This shared connection transcends boundaries of country and culture. Within each person in this project and, in fact, on this planet, beats a heart that faces physical and emotional turmoil daily.

Michell: Your group has decided to translate this book into different languages, please tell us more about that aspect of the project.

Susan: Although we, as individuals, are separated by distance and frequently by language, the daily living, emotional struggles, and fears of FA unite us as humans. This disease affects us individually, our families, friends and community. It is up to us to educate ourselves and others about, not just our disease, but our collective humanity on this earth. Look at my heart, not just the symptoms of this disease. Get to know me & others through the lens of FA. Knowing about my physical struggles can help me & you relate and are more empathetic & understanding with people whether or not they have an obvious disability. We all feel: from frustration to sadness, fear & doubt, love & anger.

Michell: Do you believe that this project will lead to other extraordinary events in the future?

 

Source/read more: Recovering the Self

 

 

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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