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Batten CLN3 Research Conference

My head continues to spin. I was fortunate enough to be able to attend the Beyond Batten Foundation’s 1st ever in-person meeting on the state of research for CLN3. Families from many states (CO, D.C, MA, MI, NE, OR, PA, TX, UT) and even the Netherlands were represented. BBDF founders Crag and Charlotte Benson and HOPE founders Wayne and Missy Herndon along with BBDF President and CEO Mary Beth Kiser held a dinner for the family partners on wednesday night. This was my 1st time in contact with other families that are dealing with the realities of Batten, some for a year, some for 26 years! I felt an immediate calming. These strangers got it, they understood what my family was going through; a

New Home and other things...

We are so incredibly overwhelmed with the love and generosity of our village near and far. We would love to be able to thank each of you individually. if you would, please, complete this short form so we can properly thank you: https://goo.gl/forms/XzXIlscZSIRhnCIs1 I wanted to post an update as to where our life currently is... Shortly after diagnoses, we found a new home that will meet our girls' increasing medical needs and provide a space for my parents to live with us so that we have help and support as time goes on. Our current home is on the market, and we hope to be moving mid-late March. Genetic Testing is underway for the rest of the girls. We hope to have results also in

Diagnoses

As you may remember, we have been trying to find the source of Cecilia (age 8) and Lilly's (age 6) vision loss through genetic testing. We got the results back on January 3rd. Cecilia has tested positive for a mutation on her 16th chromosome on the gene known as CLN3. Lilly also has the same symptoms of vision decline, but has not officially had the genetic testing. Lilly, Nora, Ruthie, and Zelie will all be tested within the next month or so. A mutation on CLN3 is a diagnoses of Batten Disease. Batten disease is a neurodegenerative disorder. There is no treatment, there is no cure, it is fatal. It is usually first diagnosed with vision loss. Eventually, they will develop seizures aro

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© 2020 by Rare Sisters Batten Foundation

a 501c3 Non Profit Organization Tax ID 84-44-06415

PO BOX 746561

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303-842-2680

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