Rare Disease Day 2024

On the rarest day of the year, we show our stripes!

We love you so much Grayson. Thank you for being so very special and pretty awesome! We’ll always advocate for you and give you the best we can.

Thank you all for supporting Grayson and following along with us on this journey. With a bright future ahead we’ll keep pushing through!

We are very thankful for the Batten Advocates that are working so hard and speaking to congress on Rare Disease Day about the importance of our children. These children’s lives matter, so much. From requesting changes within the FDA on clinical trials and requesting more funds for rare diseases, THANK YOU!