[FAPG] New Pre-Surgery Resource for FA Patients and Families

----- Original Message -----

From: Ronald J. Bartek

 

To: This email address is being protected from spambots. You need JavaScript enabled to view it. ; This email address is being protected from spambots. You need JavaScript enabled to view it.

Sent: Saturday, November 01, 2008 3:59 PM

Subject: [FAPG] New Pre-Surgery Resource for FA Patients and Families

 

 

Hello all,

Wanted you to know about an important new resource just posted on the FARA website. The new paper on "Issues to Discuss with Your Doctor Prior to Surgery in Friedreich's Ataxia" is intended to provide FA patients and patient families with extremely important pre-surgery considerations for discussions with surgeons and other consulting physicians.  The paper was drafted by one of the FA parents most experienced in this matter - Mary-Lisa Orth - and was reviewed carefully by Drs. Mark Payne, Susan Perlman, Arnulf Koeppen, David Lynch and Lance Clyde, whose comments were encorporated into the final version. 

  

FARA Disclaimer: The information provided in the paper should NOT be used as a substitute for seeking professional medical diagnosis, treatment, or care. You should NOT rely on any information in these pages to replace consultations with qualified health professionals. As stated above, the information presented in this document results primarily from the experiences of one FA parent now trying to be helpful to other FA families that might be facing similar procedures.  Although this information has been reviewed by a number of physicians expert in FA, FARA does not offer this information as medical advice but, rather, as the thoughtful reflections of an FA parent that you might want to consider, along with your own team of medical professionals, if your FA family is approaching a similar medical procedure.

 

The paper is available on the FARA website at:  http://www.curefa.org/Issues_to_Discuss_with_Your_Doctor_Prior_to_Surgery_in_Friedreich's_Ataxia_Patients_final.pdf

 

Along with this important new resource, you might want to read, too, the related FA primer also available on the FARA website at http://www.curefa.org/primer.html

 

We would like to thank Mary-Lisa for all of her diligent research and hard work developing the new paper.  We would also like to thank the devoted medical professionals who reviewed and commented on it.  We certainly hope you find the paper helpful.

 

Warm regards,

Ron

 

Ronald J. Bartek

President

Friedreich's Ataxia Research Alliance (FARA)

P. O. Box 1537

Springfield, VA 22151

Tel (703) 426-1576

FARA website: http://www.CureFA.org

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Please register in the FARA Patient Registry at http://www.curefa.org/registry

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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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