Recent Blogs

Find stories from other families and employees for Rettsyndrome.org who are willing to share their wisdom, experiences, worry, and hope with you! Know that you are not alone in this journey and become a part of a community who is making strides towards finding a cure.

When Molly met Jill: Rett Connection Becomes Fast Friendship

Friday, November 8, 2019

— Becky Sher Molly Prichard jokes that she and best friend Jill Black met “online dating.” And to hear them talk about their fast friendship does sound like a conversation about Internet matchmaking — they mention instant connections, plans to meet in person after finding each other online, and even family members’ concerns that the … Read More

Unwavering in Our Mission

Thursday, October 31, 2019

Rett Syndrome Awareness Month has been incredible. As a community, you rallied like never before – speaking out to share the good, the bad, and the ugly about Rett syndrome to educate the world and move the needle. Your efforts continue to make a difference. Today, more people know about Rett syndrome than ever before … Read More

ACADIA Announces Launch of Phase 3 LAVENDER Study for Trofinetide

Wednesday, October 30, 2019

Dear Rett Community, Today we took a significant step forward with the trofinetide clinical development program initiating the pivotal Phase 3 LAVENDER study. As we have shared before, LAVENDER is a 12-week study that will evaluate the efficacy and safety of trofinetide versus placebo in approximately 180 girls and young women aged 5 to 20 … Read More

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