This a heartwarming story of a family giving back to their community in memory of their son, as told by Dixie Bergeron, Jacoby's mom.  They set this up in the clinic at Children's of Mississippi in Hattiesburg. 

"Jacoby was diagnosed with CLN2 in 2015. He won his battle with Batten in 2020. I can still hear his laughter and see that infectious smile! Jacoby's Joy Box  came from a place deep within my heart.  I have always had the need and desire to help others.  I would give my last to anyone that really needs it. You see when Jacoby passed away my purpose was also gone.  Yes I'm still a mom but he was so much more than my son.  He was my world. I would say I was his but Jacoby loved EVERYONE  and he brought so much joy to everybody he met.  I am not and never will be ready to allow his story to be over.  I wanted to do something that would allow his memory to live on, bring joy to children, and it had to be something I could manage on my own. People here weren't supportive when he was alive so I know they certainly aren't going to help now.  I wish I could have done this for Batten babies/Batten clinics fortunately there aren't any here!! I want the Batten community to know I'm here.  They are my family and I'll always be there for them until I take my last breath.  I will continue to raise awareness and try my best to do what Jacoby did so innocently..... bring joy to others.  Myracle is continuing to be the amazing sister she was to Jacoby.  She helped set up this area for the kids and she continues to talk about him daily.  This part of the journey is by far harder than physically caring for him.  I know that's not possible so for today I find comfort in making others smile." 

Today we make a truly bittersweet announcement. After 7 years of dedicated service, Tracy Kirby, has shared her plans to take on a new adventure. We are saddened to lose her, she has meant so much to our families and our team in the office. Yet, we are so excited for the opportunities that lie ahead.

As the Executive Director, having Tracy on the team truly was a gift. Her knowledge of our families and the Batten Community at large is distinct. I have enjoyed getting to know her over this year and I will continue to cheer her own as she grows. Tracy will be with us through July 15th. Please join me in celebrating Tracy and wishing her well.

Tracy would like to share this message with the community...

"I have been truly honored and privileged to work at BDSRA for 7 years, and I am so proud of what we have accomplished together, as one Batten community. Thank you for sharing your stories, your hopes and your heartbreak, for inviting me into your homes and your families. The knowledge and experiences you shared with me enabled me to do my job better. I was able to answer questions for families and researchers, pharma and biotech. I learned from not only parents but siblings, grandparents and other family members. Researchers took time to explain things to me in a way that in turn I could explain to parents. Doctors shared information that enabled me to know the medical side of Batten disease and family needs that I may have missed. I know the work we have been doing will continue, and I will forever be grateful to have been a part of this community."

International Batten Awareness Day was a huge success! Families from all over the world shared their stories and we raised over $13,000 through the Virtual 5k!

Dear Families:

 

The University of Rochester Batten Center (URBC) invites all Batten families to participate in research during the days preceding the virtual BDSRA conference. Remote visits will be completed by televideo, with you and your child at home and the URBC researchers in Rochester, New York. To participate, you will need a high-speed internet connection and a computer with a webcam, or a tablet or smartphone.   Our team will provide you with instructions ahead of time, and conduct a test to make sure the televideo connection works well. Research activities are open to individuals with any form of Batten disease.

 

During your televideo research visit, the following URBC research activities may occur:

• Natural History Study (Unified Batten Disease Rating Scale (UBDRS), review of medical history, questionnaires)
• Cognitive testing
• Medical record study enrollment
• Contact registry sign up

 

Even if you do not attend the virtual BDSRA conference this year, you can take part in the remote research during that week or at other times throughout the year. We are happy to find a time that works for you and your child.   To schedule a remote research visit or learn more, please call Amy Vierhile, PNP at (585) 275-4762 or contact us at [email protected].

 

Sincerely,

The University of Rochester Batten Center team