Event Listings

 
 

02.22.2010A Mother’s Story

A Mother’s Story, by Charlotte Benson

As I stared out of the window on my flight from Baton Rouge to Austin, I prayed for my family and our future, and for Christiane’s healing.  I watched rays of sunlight angle down from above dashing horizontal shelves of clouds and refracting the light into a cascading effect.  Waterfalls, I thought.  God has created waterfalls of light in the clouds and I wondered why.

When I finished praying, I pulled the blind down and turned to Craig sitting next to me in the middle seat.  He had just finished reading the last pages of a book called The Shack.  I asked him if he liked it, and what was his favorite part.  He thumbed through the pages, said that it was all good, and that he wouldn’t know where to start.  Then he turned to a chapter in the book and handed it to me to read.

I read a legend of an Indian tribe that was plagued with sickness.  The old wise medicine man had announced that the only hope for this dying community was for the chief to sacrifice his only daughter.  The chief couldn’t bring himself to carry out such a horrific assignment and the tribe continued to perish.  At last, the man to whom the chief’s daughter was betrothed fell sick and was dying too.  In an attempt to save the man she loved, the girl hiked a day and well into the night to a towering cliff and jumped to her death.  The next morning, the entire tribe had been healed and the chief, along with the girl’s fiancé, fearing the worst, struck out to find his daughter.  They found her lying at the base of the cliff and the grief-stricken father raised his arms to the heavens begging the Great Spirit to memorialize this spot.  All at once, a waterfall burst out from the top of the cliff, cascading down to the scene below.

I could hardly believe what I had read because just minutes before, I was marveling at the beautiful images of waterfalls that God was showing me in the clouds.

This experience reminded me that although we don’t know if Christiane’s life will be sacrificed, we do know that it has purpose and meaning, and that God is using her in a mighty way.  Christiane is the inspiration for the development of Beyond Batten Disease Foundation.  Because of her, our subsequent development of a carrier-screening test for Battens and hundreds of rare diseases will save countless others from experiencing the same devastation.

Waterfalls will forever have new meaning for me.  They are a constant reminder of God’s purpose, endless love, and refreshment for the soul.

If God can use a seven-year old with a terminal illness in such a profound way, I wonder how he can use me?

02.21.2010Rare Disease Day - Retailer Support

In honor of Rare Disease Day on February 28th

The following retailers are donating a portion of their proceeds to the Beyond Batten Disease Foundation
Rare Disease Day

Austin
1379 Kids • 2727 Exposition Blvd. • 2/27
Austin Pilates Barn  • 1600 Northwood Road • 2/23 & 2/26
Bella Mi • 1601 W. 38th Street • 2/27
Bettysport • 916 W. 12th Street • 2/27
Feather Your Nest • 3500 Jefferson St. • 2/27
Hayden Avery • 1515 W. 35th Street • 2/26 & 2/27
Lee’s Meat Market • 1601 W. 38th Street • 2/26 & 2/27
Teo’s • 1206 W. 38th Street • 2/27 & 2/28

Houston:
A Bientot •3268 Westheimer Road • 2/27
River Oaks Bookstore • 3270 Westheimer Road • 2/27
Thompson Hanson Home and Garden Shop • 3600 West Alabama • 2/27 & 2/28
Tiny Boxwood’s Café • 3614 West Alabama • 2/27 & 2/28

12.14.2009Westbank moms hit the road to battle Batten Disease

Three Austin-based runners help spread the word about Batten Disease.

Click here to read more.

10.15.2009NIH announced expansion of the Rare Diseases Clinical Research Network

Good news in the fight against Batten Disease and other rare diseases. The NIH announced expansion of the Rare Diseases Clinical Research Network and awarded $117 million for 19 research consortia:

Click here to read more.

10.01.2009BBDF Awards largest research grant to study Juvenile Batten Disease

The Beyond Batten Disease Foundation awards the largest research grant ever made to study juvenile Batten Disease:

“HOUSTON – (Sept. 30, 2009) – Dr. Andrea Ballabio, scientific director of the Telethon Institute of Genetics and Medicine (TIGEM) in Naples, Italy, has joined the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital and Baylor College of Medicine as a visiting scientist for one year. During that time, Dr. Ballabio’s research project will be based on his discovery of a gene that controls the ability of the cell to degrade and recycle toxic molecules, which was recently published in the journal Science. In particular, his team will focus on testing the application of his discovery for the therapy of Juvenile Neuronal Ceroid Lipofuscinoses, also known as Batten disease, a rare and fatal genetic disorder of the nervous system that begins in childhood.”

Click here to read the full article.