http://www.ksfy.com/sports/headlines/25576924.html

 

Watertown 9-Year Old Battles Disease with Love of Baseball

 

By Erik Thorstenson

Story Created: Jul 17, 2008 at 3:29 PM CDT

 

 

(Watertown) Tysen Cook has an incurable disease called Friedreich's Ataxia. It's a disease of the central nervous system, which causes your muscles to break down over time. But that hasn't stopped Tysen from playing the game as the nine year is his third season playing baseball.

 

Tysen's dad Justin Ward says, "He's always playing baseball all summer and in the winter. He can't wait to play baseball."
Tysen Cook says, "I love the sport. It's fun."

 

When Tysen was five he was diagnosed with Friedreich's Ataxia, a disease that affects his balance and ability to run. So when it's his turn to bat, his teammates run for him, but he's still got a pretty good game.

 

Tysen's mom, Nicole Rieffenberger says, "He does what he can. He hits and can toss it well. The disease hasn't affected those muscles yet."

 

This coming weekend, Tysen will get to meet his favorite team, the Twins before their home game against Texas. It'll be a good tuneup for a kid who dreams of managing the Twins someday.

 

Tysen says, "Going to Twins games is fun and I love to watch Sportscenter in the morning."
"He's been counting down the days," his mom said.
"He wants to ask them about managing. He's always asking me about what to do in certain situations," Tysen's dad said.

 

The time on the field gets Tysen's mind away from a disease, which has also caused him to have several heart surgeries. There is hope though. He and his family go to California every other month to try an experimental drug.
"The doctors are very hopeful," Tysen's dad said.
"It's fun. We get to stay in
California. I hope they find a cure for my disease," Tysen said.

Tysen is also a straight-A student. The law firm where Nicole works at set up the chance for Tysen to meet his favorite MLB team.

 

 

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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