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Contact Us

For more information on Batten disease, or to speak with us about funding for research, please contact us using the form below. Thank you.

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Teresa Wood

My son has a rare disease that is terminal. FDA is a roadblock for clinical trials.

4/8/26, 7:08 PM

Elizabeth Bills

It was so nice to meet you when my dad made paintings for the auction. Stay strong! LOVE The Bills

10/11/24, 6:53 AM

Aruna Durbin

Hi Gorgeous Girls! May the Lord bless you and hold you in the palm of His Hand. Much Love, Aruna and Mitch.

9/10/24, 12:02 PM

Cinda Paynter

Greetings from Montana! I am the mother of Kellen who is 10 and has CLN3. He is blind, seizures controlled by meds and we are beginning to see some memory loss. We are all inspired by your strength and courage! Lots of love, The Paynter Family

11/20/20, 2:28 PM

Maryclaire and Dave Rimron

Hello Kahn family! The last time we saw all of you was at the Desert Museum in Tucson several years ago. It was fun to show Valerie and Natalie all of the desert animals. We also had fun seeing you at the American Girl Store in Phoenix. The girls have grown up so much since then! Hugs to you all. MC and Dave

11/5/19, 9:45 PM

Jennifer McGinn

Lots of love and hugs to A&M!

10/29/19, 7:45 PM

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