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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 ———> https://beyondbatten.org/events/...

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...

August 22, 2019

We are so excited to be hosting the first Expect Miracles Gala this fall.  Please mark your calendar for October 19, 2019, and register to attend.  We will have a wonderful evening full of fun, education, advocacy, and experiences.  

Many options are available to s...

August 16, 2019

Summer has come to a close.  I am extremely thankful for this.  Summer is hard around here.  The girls thrive on routine, and the fighting and messes seem to be never-ending in the summer.  The thing with my Batten girls is that its not your typical sibling fighting- i...

July 8, 2019

I did a little home vision test with Cecilia yesterday. Her vision has been noticeably declining, to the point that she has been tripping over the baby, walking into walls, and can’t recognize people until she is about 1-2 feet from their face. Her best vision is from...

May 26, 2019

 We are still in amazement and feeling the love that our community has showed us from the Expect Miracles 5k.  We raised $36,302 for research to help find a treatment or cure for CLN3 Batten Disease.  Cecilia and Lilly loved cheering on the crowd of over 1,000 people t...

April 2, 2019

We are in full swing planning the Expect Miracles 5k event.  Registrations are coming in steadily, and we are expecting a great crowd of supporters.  There are a few original Rare Sisters shirts, and a brand new selection available for pre-orders.  New apparel will be...

April 2, 2019

A few weeks back, Cecilia had a sleep study done.  We went overnight to stay at the Childrens Hospital.  She did so awesome with all the wires and stickers all over her body.  She had a full EEG done while she slept.  That means she had 30 probes glued to her head and...

February 20, 2019

It’s been a while since I’ve updated our village on the girls.  Not too much to report- which is a good thing.  For the most part, they are pretty stable.  The biggest issues we’ve been dealing with are behavior related with Cecilia.  We’ve been trying out different do...

January 24, 2019

We are so so excited to have this fundraiser!  A Rare Sisters Villager, Kendra, has been able to get 36 pairs of Goodr Sunglasses donated to us.  These sunglasses are so fun and made in Colorado.  Since they have been donated, 100% of the proceeds will go to the Rare S...

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