Over $70,000 raised in February!

It is an exciting time for the Foundation and our affected families as we near the possibility of a clinical trial for the first-ever treatment for juvenile Batten disease. Our February newsletter highlights a new donor advised fund, Bind Up Batten, three community fundraisers, a plethora of ways to get involved and of course your monthly update on the Be Project, which is now up to $3.7 million dollars towards our $6 million goal! You can read the full newsletter HERE!

High Schoolers Taking a Swing at Batten!

The Youth Leadership Committee hosted their first-ever fundraiser at TopGolf in Austin Texas on Sunday, February 18, 2018 and raised $9,684 for research! Special thanks to our sponsors Covert Auto Group, Jaguar Land Rover Austin, Smiles Austin, Tarrytown Pharmacy, HillCo Partners, Shannon Windham-Realtor, DeDe Church & Associates, LLC and Kasandra Keyes Photography + Design.


BBDF Welcomes the Bind Up Batten Fund

BBDF Welcomes the Bind Up Batten Fund to our family of donor advised funds. By pooling resources and connecting communities we are able to expand our impact and reach to accelerate research. We are so grateful to have them join forces so that we can one day eradicate juvenile Batten disease for Charleston and the hundreds of other children who are affected.

Last  year, the Klein family received the devastating news that their oldest son, Charleston, suffers from juvenile Batten disease. The Kleins quickly reached out to Beyond Batten Disease Foundation for help and guidance. To find out more about the Bind Up Batten Fund visit the website.

Interview: Co-Founder, Charlotte Benson on coping with a child’s terminal illness

Listen to BBDF co-founder, Charlotte Benson as she discusses coping with a child’s terminal illness on The TKO Show with Kara Ro.

Charlotte and Craig Benson established Beyond Batten Disease Foundation in August 2008 after their then five-year-old daughter, Christiane, was diagnosed with juvenile Batten disease. With other families affected by Batten disease and supporters who share their hope and resolve, they are working tirelessly to create a brighter future for Christiane and all children with Batten disease. Listen to the podcast HERE!

BBDF Welcomes Tyler’s Mission

BBDF Welcomes Tyler’s Mission to our family of donor advised funds. By pooling resources and connecting communities we are able to expand our impact and reach to accelerate research. With their motto “GO TYLER, BEAT BATTEN” the Kim’s have already raised over $20,000 for research and we are so grateful to have them join forces so that we can one day eradicate juvenile Batten disease for Tyler and the hundreds of other children who are affected.

Last year, the Kim family received the devastating news that their youngest child, Tyler, suffers from juvenile Batten disease. The Kims quickly reached out to Beyond Batten Disease Foundation for help and guidance. To find out more about Tyler’s Mission visit the website.

“While our hearts are broken, we are incredibly blessed that today, Tyler is in great physical and mental shape… Our family and Team Tyler’s mission is to find a cure and defeat Batten disease.” – The Kim Family

In Memory of Tyler Allman

Tyler Pershing Allman

April 9, 2001 – January 21, 2018

Our community lost a super hero when Tyler Allman passed away on January 21, 2018. The Allman family and the Team Tyler community have been committed BBDF partners and our hearts and condolences go out to them. You can view their family story and donate in memory of Tyler at tylerallman.com.

“Surrounded by his parents and brother, Tyler peacefully entered the Kingdom of Heaven on January 21, 2018… Our son Tyler brought more inspiration in his 16 years than most do in a lifetime. Tyler was born with Juvenile Batten Disease but didn’t show signs of the terminal, neurodegenerative disease until he was 8 years old. Tyler loved every sport and was born a natural athlete like his dad. Tyler played t-ball until he began to lose his fine and gross motor skills, his vision, and suffered from seizures and eventually was no longer able to walk or talk. His favorite team was the Cubs and there was always a pitching machine or a batting tee in our backyard. Ty loved getting up early as a 6-year-old to go golfing with his dad or hitting golf balls in the woods behind our home. He loved the adventure of riding his dirt bike so far out that we couldn’t see him, but we were always thankful for his return.” 


Featured Fundraiser

On Sunday October 21st, 25 girls gathered in Grace and Brynley May’s front yard to show support for one of their school mates. Each girl baked beautifully decorated trays of delicious cookies, cupcakes and brownies and delivered them to tables lining the front yard. Fourth grade girls welcomed neighbors along the sidewalk and flagged down passing cars with homemade signs until every baked goodie was sold.

The girls awarded Beyond Batten Disease Foundation $1,000 with their loving and supportive efforts to help a friend. Thank you so much to all who participated, and especially Grace and Brynley for organizing the bake sale and offering their home.

Featured Fundraiser

The Gummy Bear Gourmet Lemonade Stand

Every child loves a lemonade stand! On August 10th, five precocious children attending The Gummy Bear Gourmet cooking camp, under the direction of Ashley Crider, struck out to put their love of squeezing lemons to the test.

“Of all the fabulously clever, extravagant, and creative recipes the children were making, they liked squeezing lemons the very most. They could have juiced lemons for the full three hours”, Ashley reported.

Along with her two children, Steven age 12 and Charlotte age 10, Ashely took the children’s enthusiasm for squeezing lemons as an opportunity to teach them how to make lemonade and how to make a difference. The class lovingly gave away free lemonade at their stand on Vista Lane in West Austin while accepting donations to benefit Beyond Batten Disease Foundation.

Ashley has been a shining example of a loyal supporter and a faithful volunteer since the inception of the foundation. On behalf of BBDF, we’d like to extend our gratitude to Ashley for her continued contributions and for fostering community support among children.

Date Night with Keith Urban Auction Preview



Formula 1 Package

  • 2 premium reserved seats for all three days of the Formula 1 United States Grand Prix™ with on-site parking pass
  • 2 VIP reserved tickets to a concert of choice in the Grand Plaza Amphitheater
  • A “Hot Lap Lesson”: 3 laps on the full Circuit of The Americas Grand Prix course with a professional driving instructor.Instructor will provide driving tips between laps in an effort to improve your performance.Lap times will be recorded so you can compare your times to those of Formula 1 drivers. Includes photo at finish line


Girls’ Dream Package

  • 4 Lake Austin Spa Resort’s “Full Day Away” Spa Packages. East guest may choose from 2 rejuvenating 50-minute package spa treatments and one indulgent 80-minute package spa treatment. Package includes spa lunch, spa gift and gratuities
  • One Chanel Mademoiselle bag
  • Full makeovers for 4 at Ron King Salon. Package includes cut, color, makeup, and shellac manicure for 4 guests
  • A $2,500 gift certificate to The Menagerie, Austin’s premier fine jewelry, gift, and tabletop salon
  • Private Luncheon for 4 with a Fashion Presentation at Neiman Marcus Austin and 4 $250 gift certificates



Cabo Luxury Home

  • 6 day and 5 night stay at Casa Malibu in Pedregal, Cabo San Lucas, Mexico. Click HERE for more details on the luxury home
  • Gated, guarded community
  • 5 bedroom, 5 bathrooms plus 2 half baths
  • Sleeps 12-14 and perfect for 2 families or 5 couples
  • Flat Screen TVs, Satellite TV, Wireless Internet
  • Pool, Jacuzzi, Outdoor Bar
  • Dates of stay will be arranged through the property owner. The package excludes Easter (April 2-9, 2012) and Thanksgiving (November 19-26, 2012) dates


Louisiana Alligator Hunt

  • A thrilling alligator hunt and saltwater fishing adventure in the Louisiana bayou for up to 8 people
  • Package includes a 4 day and 3 night excursion, accommodations, some meals, guide service and alligator hunting tags
  • Great for a weekend with friends or a father and son adventure!
  • Dates of the package must fall within Louisiana’s alligator hunting season and are to be arranged through Beyond Batten Disease Foundation


Jack Ingram Private Concert and Dinner in Austin

  • Country music star Jack Ingram will perform a private, intimate concert for you and your friends in your Austin area home
  • The package includes a catered gourmet dinner from 34th Street Cafe and flower arrangements from David Kurio Designs


Meet Keith Urban

  • A once-in-a-lifetime opportunity for you and a friend to go behind the stage, meet, and have your picture taken with Keith before the concert on February 10, 2012
  • What could make this package even better? One autographed guitar with a personal message from Keith!
  • Note: Must be present at the event to participate


Aspen Mountain Paradise

  • 7 day and 6 night stay at a new, gorgeous home located in Snowmass Village. Click HERE for more details on the home
  • Ski access via a trail out and down the street in (limited to ability)
  • 4 bedrooms and 4 private baths comfortably sleeps up to 10 people
  • Fireplace, hot tub, Jacuzzi and steam showers
  • Large outdoor deck areas for entertaining and enjoying the spectacular views
  • Large flat screen TVs and wireless internet connection
  • Dates of stay to be arranged with the property owner. The package excludes Christmas, Thanksgiving, Spring Break, and Fourth of July dates


UT Austin President’s Package

  • 2 VIP tickets to the President’s Suite for any home game of your choice! A Longhorn football games is the hottest ticket in town, and the President’s Suite is the best seat in the house. President Bill Powers invites the high bidder and their guest to a Longhorn home football game in the 2012 season
  • Reserved VIP parking
  • The package also includes 2 Southwest Airlines round-trip airfare tickets!


Texas A&M Chancellor’s Package

  • Be the Chancellor’s guest at the Texas A&M vs. LSU game on October 20, 2012 and receive 2 VIP tickets to sit in the Chancellor’s Box, 10th Floor, Kyle Field
  • Package includes the Presidential Pre-game Buffet and one parking pass
  • Tickets and parking pass will be mailed to recipient after September 1, 2012


Snowmass Village Getaway

  • 7 day and 6 night stay in a lavish, 6-bedroom mountain home near Aspen
  • Spacious home accommodates up to 10 people
  • 2 cars are available during your stay and shuttle transportation to and from the airport will be provided
  • Gourmet kitchen, a fitness room and a full game room with a bar
  • Natural landscaping with wildflowers and a snowmelt driveway
  • Dates of stay to be arranged with the property owner. The package excludes Christmas, Thanksgiving, Spring Break, and Fourth of July dates


Duck Hunting Package

  • 4 day and 3 night stay at Wild Wings, a private hunting lodge in Stuttgart, Arkansas, the undisputed Duck Hunting Capital of the World
  • Package includes all hunting arrangements for 4 hunters and accommodations for up to 4 additional family members
  • Lodge accommodations and some meals included
  • Dates to be coordinated with lodge owner and must fall within duck hunting season



French Chateau Escape

  • A unique opportunity to spend five days/nights in a stunning Gustavian cottage on the property of a fabulous privately owned French chateau located in the spectacular Loire Valley, 2 hours southwest of Paris
  • The cottage has 4 bedrooms and 4 bathrooms and sleeps 8 people
  • Enjoy visiting the other chateaux in this famous wine region, such as Chambord and Cheverny, bike riding, and, of course, the food and wine
  • The package includes weekend dinners with the owners in their exquisite chateau
  • Available between the months of May & July


Diamond Package

  • 18K White Gold Diamond Loop Earrings, 5.06 Total Diamond Weight (TDW), Round Brilliant Cut (RBC)
  • 14K White Gold Diamond Necklace, 13.72 Total Diamond Weight (TDW), Round Brilliant Cut (RBC)


Cowboys Luxury Suite

  • Watch the Cowboys play against the Cleveland Browns from the comfort of a luxury “Ring of Honor” suite
  • The suite package includes tickets and parking for 18 people
  • This game will feature Colt McCoy’s return to Texas
  • The auction winner will receive an official certificate to redeem, along with complete instructions and contact info
  • Date of game TBA


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