BBDF and Theranexus collaborate to publish “Evaluating and modulating TFEB in the control of autophagy: toward new treatments in CNS disorders” in the journal Fundamental & Clinical Pharmacology
Rare Sisters brought together a community of over 1,000 supporters on Sunday, April 28 for the fund’s first-ever Expect Miracles 5K. Participants were treated to a beautiful Colorado Spring day at Lake Arbor in Arvada, where runners and families enjoyed a whole host of outdoor activities as well as a crowdsourced art project and local vendor fair. The event raised nearly $40,000 to support juvenile Batten disease research, advancing us closer to a clinical trial and viable treatment. Thank you to all the runners (present and virtual), supporters, sponsors, and volunteers who came together to make the first annual Expect Miracles 5K a tremendous success. Special thanks and recognition to Beth Fries, mother and co-founder of Rare Sisters, who organized the Expect Miracles 5k and inspired good among so many.
There are ample opportunities during the month of April to get involved and support BBDF. Make sure to visit each event page for information on how to participate, including options for those who can’t physically be present.
- Kelly Wynne Dare to Donate | All March | Online: For the month of March, Kelly Wynne will donate 10% of all purchases of the Soco Crossbody to BBDF.
- Tiles Gone Wild! Mah Jongg Tournament | Sunday, April 1 | The Woodlands, TX
- HOPE on the Green | Monday, Aril 8 | The Woodlands, TX
- Taking a Swing at Batten | Sunday April 14 | Austin, TX
- ORS Kids Superhero Run | Saturday, April 27 | Jackson, MI
- Expect Miracles 5K | Saturday April 28, Arvada, CO
BBDF welcomes Sofia’s Dream to our family of donor advised funds. By connecting affected families and communities, we are able to pool resources and better position ourselves to increase awareness and accelerate research. Sofia, her family and BBDF share the same dream – to find a cure and eradicate juvenile Batten disease – and together we will. We are so grateful to have Sofia’s family as part of our community.
Sofia was diagnosed with juvenile Batten disease (CLN3) in 2015, and despite her vision loss and poor memory she remains eager to explore the world alongside her family, including her twin brother, Max. Click here to learn more about Sofia.
Garland Benson was joined by family and friends as well as members of the community on Tuesday, Dec 18 for a fundraising event at Honest Mary’s. The Austin-based restaurant, which celebrates healthy eating with its menu of grain-based bowls, donated 100% of its evening profits to Garland’s Be A Hero campaign. It was a record breaking Tuesday for Honest Mary’s, and together we raised $385!
Garland Benson shared his story with the world last night on CBS News, calling on each of us to help put an end to Batten disease and not just save the life of his sister, Christiane, but all those living with this traumatic and fatal illness. Click the story links below and discover how this incredible young advocate and loving brother took it upon himself to raise the final $1 million of a $6 million campaign to fund an FDA approved clinical trial.
Learn about Garland Benson’s BE a Hero campaign to raise a million dollars to fund a treatment for his sister who has juvenile Batten disease. He is so close to reaching his goal with only $124,000 to go and a few weeks of fundraising remaining! Support him and his sister with a donation today – Donate Now.
by AN ANONYMOUS BATTEN MOTHER
I grew up in a family of story tellers. Every get together involved reminiscing and sharing the same old stories. Most happened before my time, yet I’ve heard them so much it’s as if I was actually there.
Many stories involve my Dad, his two brothers and his sister. Many include their childhood shenanigans. They would be playing in the house and something would get broken. They would do chores and something would get broken. They would move furniture to turn the living room into a football field and something would get broken. The result would be my grandmother grabbing the glue and putting it back together.
I know these broken things on her shelves. They weren’t matching sets or family heirlooms. They weren’t pieces that were priceless or irreplaceable. But they were special to her. So as things broke, she could have easily thrown them out, but she chose to piece them back together. Displaying them once again in hopes that no one would see the damage that had been done to them.
I often think about these broken knick- knacks and feel we have a lot in common. All it took was one visit to the doctor’s office to knock me down and shatter me to pieces. As the doctor revealed our diagnosis, I wasn’t even sure what he was saying. But when he said it will affect other parts of his body and his longevity, I literally fell to the ground. I was completely broken. Not the broken that leaves you in two pieces. But the broken that shatters you. Picture a glass dropped from the highest cabinet in the kitchen and exploding into tiny slivers everywhere. I was that kind of broken. How would I ever get up off the floor?
Then I thought of the words written by my sweet little boy just 4 days earlier on his Star of the Week poster…I am a star because “I never give up.” That was the glue that started putting me back together.
I walked out praying, you know the kind of prayer that sounds like a jumbled ramble of words that even if God was yelling from the top of his lungs to guide me, I wouldn’t have even heard him. It was that kind of prayer. But, He glued me together enough to put one foot in front of the other to walk out of that doctor’s office.
We came home and I looked at our daughter. How is this ever going to be ok I thought and the glue started letting loose. She hugged me and asked if we could cuddle on the couch together. She held me tight. Gluing those pieces right back together.
That night on one of the first of many sleepless, tearful nights I said to my husband, “What are we going to do?” He said we are going to get up and go to work and school, just like we do every other day. Our children deserve us to support each other and not fall apart. His love for our family was the glue that I needed once again.
The days to follow, 902 to be exact, I have fallen apart and been glued back together more than I can count. If someone looked closely, they would see that I am not who I once was. Just like the knick -knacks on my grandma’s shelves, I am together, but a little different than I used to be. But as pieces break off, God finds a way to glue me back together. He provides glue from my family, from the courage of Craig and Charlotte, from the kindness of Mary Beth, from the encouragement of Danielle, from the strength of Wayne and Missy, from the knowledge of the scientific researchers and from the promise that He has a plan the far outweighs my understanding.
Long time BBDF supporter, Joe Sikorra has published a book and dedicated a portion of the proceeds to BBDF! You can snag a copy via Amazon, but remember to shop via Amazon Smiles (www.smile.amazon.com) so that .05% of your purchase will be donated to your favorite charity. You can purchase the book directly HERE.
This moving story shows how a family found joy after their hopes and dreams were shattered by the rare, fatal neurological illness of their two sons. Told by the family’s father, a popular Catholic radio host and marriage counselor, it recounts the way he and his wife received the courage and the support they needed to give their children abundant, fulfilling lives in spite of their gradual decline.
What initially seemed to be a tragedy for Joe Sikorra’s family became a story of human triumph, an outcome made possible by the compassion and mercy of God. Their example can help those facing unexpected losses and challenges to believe that by placing their trust in Providence they too can overcome hardships with the most powerful force on earth—God’s love.
An Austin 13-year-old is determined to find a cure for a rare & fatal disease in order to save his sister’s life. And University of Texas quarterback Sam Ehlinger is helping him. Watch the story with Amanda Salinas HERE!