Update on the Benson Family's Battle Against Batten Disease

by ih-chi admin

You may have heard about the Benson family here in Austin whose daughter, Christiane, is battling a rare genetic disorder called Batten Disease.

Christiane’s younger brother, Garland, set out to raise $1 million by the end of 2018 to help fund treatment for his sister and also assist others affected by Batten. His strategy was simple: if he could get 100,000 people to each donate just $10, then he would reach his goal of $1 million.

At first it seemed an insurmountable task. But, those who have heard his story of selfless sibling love have been touched and moved to support the cause. His effort has garnered extensive attention, even from University of Texas Longhorn QB Sam Ehlinger.

And today, Garland’s goal seems within reach — he has raised over $600,000 from generous donors in Austin and around the world. The $1 million he is shooting for would go towards the $6 million capital campaign amount needed to advance the drug to clinical trial.

Christiane Benson is a patient of ours here at Child Neurology Consultants of Austin. She is a lively teenager rarely without a smile on her face who loves cooking, painting, Harry Potter, and walking her dogs. Her fight and her family’s cause has also touched us.

Batten Disease is a debilitating, and terminal, disorder that causes blindness, seizures, and developmental delays. While there is currently no cure or treatment for it, this would be a first-ever clinical trial that can slow down progression of the disease. But, research is expensive.

At CNCA, we are honored to know the Bensons who are working so tirelessly to bring awareness to this disease and help further research and fund treatment for all those children afflicted with this heartbreaking condition.

To learn more about Garland’s mission and his love for his sister, or to support the cause, please visit:

 https://beyondbatten.donorpages.com/TeamBeyondBatten/GarlandBenson/

There is even an easy “text to donate” option whereby texting the word HERO to 501501 will simply add $10 your monthly bill.