----- Original Message -----
Sent: Saturday, May 17, 2008 9:30 PM
Subject: Ride Ataxia Success

Hi Everybody,

650 miles in 13 days has turned into a Quarter Million dollars for Ataxia Research!

Money kept rolling in until a couple weeks ago and our total now is $135,000! That is unbelievable! This huge number is due to the fact that we had so many enthusiastic team members who were fund raising machines. We had 42 registered participants and 50 cyclists the first day, everyone pitched in to make it happen.

The success story does not stop there. The National Ataxia Foundation and the Friedreich's Ataxia Research Alliance have agreed to contribute equal amounts to bring our total to $250,000 (one quarter of a million dollars)! This money will be used to fund two $125,000 research grants. The Request For Proposal (RFP) and Application for the grants is available on either of their websites (
ataxia.org, curefa.org).

The grants will target "translational research." Research that seeks to take a treatment from the laboratory to ataxia patients like Me, Sean, Spinner, Linda, Sam and Beth just to name a few. These grants are on the fast track to be collected, reviewed, awarded and distributed by August 2008. We are getting money to the researchers as fast as possible. More details available in the RFP.

This is absolutely incredible how it has all come together. Our team had a lot of fun raising a ton of valuable research money and we are grateful to be collaborating with two great organizations.

For a recap article on the ride and some sweet pictures please check out the FARA newsletter here:
http://www.curefa.org/docs/newsletter_2008_spring.pdf or the current Issue of Generations (NAF's Newsletter): http://ataxia.org/resources/generations.aspx

Ride Ataxia is looking to the future.  Ride Ataxia III will take place in the Pacific North West ending at the 2009 NAF Annual Membership Meeting in Seattle (more info later), and I have a lot of great stuff planned for the summer.  Stay tuned to the blog (http://rideataxia.blogspot.com) for videos of Ride Ataxia I and II, and Ride Ataxia Day Trips including Skydiving, Adaptive Waterskiing, River Rafting and plenty of Cycling.

We will also be launching a new website by the end of the summer...stay tuned.

Have Fun,

Kyle

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http://rideataxia.org
http://rideataxia.blogspot.com


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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