April 3, 2020

Register NOW:


Due to the current social distancing restrictions, we have decided to convert the Expect Miracles 5k to a virtual 5k. Even though COVID-19 is here, Batten Disease did not disappear. Batten Disease persists no matter wha...

February 21, 2020

We are in search of a caring, fun, and strong person(s) to provide respite care in the afternoons, and some weekends for Cecilia.  Cecilia is 10, and suffers from CLN3 Batten Disease.  She is blind, cognitively delayed, and requires one on one attention at all times du...

February 13, 2020

We are so excited to announce that registration is finally open for the 2020 Expect Miracles 5k is now open!  


The 2020 Expect Miracles 5k will benefit medical research with the Beyond Batten Disease Foundation AND the Fries Family for expenses associated...

January 9, 2020

This year, the Expect Miracles 5k event will be on Sunday, April 26, 2020.  Registration will open in Early February.  Proceeds will be benefiting the Beyond Batten Disease Foundation AND the Rare Sisters Trust for medical travel expenses and a new van that will accomm...

January 5, 2020

We are so grateful to our amazing community that came out to support us and the Beyond Batten Disease Foundation.  Together we raised close to $150,000.  These funds will be used to continue to find a treatment for CLN3 Batten Disease.  

We are so grateful for...

November 24, 2019

The girls have been tolerating the tests and exams better than expected.  Although, this year we have definitely seen more behavior and resistance from Cecilia.  Wednesday was a busy day day for both girls.  Cecilia had her heart echo, PT evaluation, and EEG.  Her true...

November 20, 2019

Cecilia had her day under anesthesia.  They were running a little behind schedule, but Dr. Dang Do and Cecilia had a thumb wrestling tournament while we waited to get started.  She had brain MRI, spinal tap, eye exam, and hearing test.  She did great, and they even fin...

November 18, 2019

The girls did fairly well today.  It was busy- especially for Cecilia.  She had 7 different appointments.  The biggest finding for them was what we already know about their vision, but putting actual data with it is difficult for us to hear.   


October 14, 2019

We are putting the finishing touches on the first Expect Miracles Gala.  It is sure to be a great event that you do not want to miss.  Today is the last day to purchase tickets for the gala.  We hope you will join us ———>

October 1, 2019

TODAY is the last day to get early bird pricing for the Expect Miracles Gala!  It is going to be an amazing night of education and advocacy for Juvenile Batten Disease.  The auction items that have been donated are so good- SO GOOD!  We have an incredible Dark Hors d’o...

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November 24, 2019