Back to School
The Rare sisters got to go back to school today. Finally. It has been since March 13th that they have been inside their school. The...
Register for they EM5k by May 6th
Registration prices go up on May 7th. We are currently about half way to our participant registration goal. Help us reach our goal, and...
Expect Miracles 5k GOING VIRTUAL
Register NOW: www.raresisters.org/5k ✨ANNOUNCEMENT✨ Due to the current social distancing restrictions, we have decided to convert the...
We are Hiring: Respite Caregivers
We are in search of a caring, fun, and strong person(s) to provide respite care in the afternoons, and some weekends for Cecilia. ...
Registration is now open for the 2nd Annual Expect Miracles 5k!
We are so excited to announce that registration is finally open for the 2020 Expect Miracles 5k is now open! REGISTER NOW The 2020 Expect...
Save the Date & Opportunity to Help
This year, the Expect Miracles 5k event will be on Sunday, April 26, 2020. Registration will open in Early February. Proceeds will be...
Miracles Made | Thank You!
We are so grateful to our amazing community that came out to support us and the Beyond Batten Disease Foundation. Together we raised...
NIH 2019 | Days 3-5
The girls have been tolerating the tests and exams better than expected. Although, this year we have definitely seen more behavior and...
NIH 2019 | Day 2
Cecilia had her day under anesthesia. They were running a little behind schedule, but Dr. Dang Do and Cecilia had a thumb wrestling...
NIH 2019- Day 1
The girls did fairly well today. It was busy- especially for Cecilia. She had 7 different appointments. The biggest finding for them...
