© 2018 by Rare Sisters

  • Facebook Social Icon

BLOG

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.   

Cecil...

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...

Please reload

Please add raresisters.batten@gmail.com to your contacts to ensure you recieve updates in your inbox and not in your spam folder.

Recent Posts

November 24, 2019

November 20, 2019

November 18, 2019

October 14, 2019

July 8, 2019

Please reload

Archive