Newsroom Archives: News

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.

2018 has been filled with fundraising, partnership and advocacy here at BBDF. With that said we wanted to share some of the media coverage for the foundation and our family partners around the country!

Chase the Cure Radio Interview on Frankie and Jess, 97.1

Austin Family Magazine write up on Be a Hero

The Klein Family Story on 13ABC WGTV

In it’s 4th year, the annual fall fundraiser, Family Night, is set for Sunday, September 23, 2018 and BBDF is excited to announce that this year’s event will be co-hosted by the Louise H. Batz Patient Safety Foundation based in San Antonio, TX. If you haven’t attended Family Night in the past, we have made quite a few changes and cannot wait for you to join us in “Splashin’ for a Passion!” For more information, including sponsorship packages and ticket information please visit beyondbatten.org/events/family-night.

BBDF Welcomes Chase the Cure 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 Chase and the hundreds of other children who are affected.

Together Chase the Cure and Beyond Batten Disease Foundation are spreading awareness and raising funds for medical research to eradicate this disease. To find out more about Chase the Cure and the Peterson family visit the website.

Spearheading a unique, cohesive strategy, Beyond Batten Disease Foundation has added ThinkGenetic to its collaborators by joining the ThinkGenetic Advocacy Partner Program.

“Partnership and collaboration have been the cornerstone of Beyond Batten Disease Foundation’s success and we are excited to work with ThinkGenetic, ” said Mary Beth Kiser, President and CEO of Beyond Batten Disease Foundation. “As a rare disease patient advocacy group, we appreciate the importance of creating awareness and sharing information.  Beyond Batten has a robust research portfolio and a principal scientist on staff.  We hope to share information and serve as a resource to juvenile Batten patients and beyond.  ThinkGenetic is the perfect platform to help us do that.”

READ FULL ARTICLE HERE