http://www.theweeklypost.com/story.lasso?ewcd=2bf5c3a5c4d2bb34

 

Crowd helps local boy at benefit


 

Published July 17, 2008

GERALDINE—People of all ages came out in droves to Geraldine City Park on Saturday. But they weren’t there for the park itself; they came out to support Jake.

Jake Willoughby is a typical ten-year-old kid from Skirum, with a loving family and lots of friends. There’s just one exception: Jake has been diagnosed with a muscular disease called Friedreich’s Ataxia. Though the disease affects all his muscles, an immediate concern for his doctors—and for Jake’s family—is the hardening of his heart.

The plan is to send Jake to
California in five separate trips so that he can get special research treatments for the incurable disease. However, those trips cost money, and that’s where the benefit at the park could make a difference.

Volunteers from several area churches came out and provided food for sale, face painting, and cakes and cookies for a very successful cake auction. Several cakes sold for over $50, and one Red Velvet cake sold for $100.

In addition, T-shirts with Jake’s picture on the front were sold at a cost of $10 apiece, and all of that money went to support Jake’s treatment efforts. None of the money was pocketed.

In addition, several local musicians offered their talents for free to entertain the crowd. There were gospel singers, bluegrass musicians, and even a rock band. They included 7 Day Ride, Chosen Generation, Willing, Backwoods Revival. “I really want to thank all the bands for coming out,” said LeAnn Willoughby, Jake’s mother, “and giving of their time and talent.”

In spite of the reason for the event, the mood was festive. People seemed to enjoy one another’s company whether they were participating in the auctions, meeting and greeting friends new and old, or simply sitting in the cover of the pavillion and enjoying the music.

In the end, the fundraiser collected $11,000, a major portion of the fund started for Jake’s treatment travel. “We’ve raised $15,000 since we opened the account June 10,” LeAnn Willoughby explained.

The treatments themselves involve an experimental medicine. Jake will receive the treatments at the
UCLA Medical Center. The family isn’t sure yet what to expect. But thanks to their friends and supporters in the region, now they have one less worry.

“What got me was when I turned around and saw all the people coming in. I just couldn’t believe that they were there for my son,” said LeAnn Willoughby. “We just really want to thank the community and the people who came out and supported us on Saturday. And it wasn’t just our community; it was county wide.”

His mother explained that Jake was excited about going on the trip, and as of yesterday the family left Skirum for
California. But before they left, LeAnn Willoughby had one last thank you.

“I really really want to thank Leslie Sisk. She’s the one who got the benefit together,” explained LeAnn. “People really do care, and still care. I never would have thought, in a million years, that that many people would have been there.”


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.

 

 

Go to top