It's National Vote By Mail Day. Voting by mail is easy and safe. Take a few minutes to request your vote-by-mail ballot, then get your family and friends to do the same. Request your ballot early, send it back early, and fill it out carefully. Get started: votesaveamerica.com/everylastvote/

As families consider the new school year and how they will protect their child with Rett syndrome, our medical advisor, Dr. Tim Benke, shares some advice and recommendations. rettsyndrome.org/covid-update-a…

oakmontmortuary.com/tributes/Mary-… What an amazing physician, friend, tireless and fearless advocate #rettsyndrome

Pediatric patients with a rare, incurable disorder—deficiency of #AADC—experienced "life-changing improvements" in a UCSF #GeneTherapy trial. "Not only did they begin laughing and have improved mood, but some were able to start speaking and even walking.” ucsfh.org/3kaT3wJ

Breakthrough Technology: UC San Francisco researchers, led by neurosurgeon Edward Chang, have successfully developed a “speech neuroprosthesis” that has enabled a man with severe paralysis to communicate. ucsf.edu/news/2021/07/4… #ucsfweill

Today is the anniversary of the discovery of the gene (MECP2) that causes Rett syndrome. This discovery by Ruthie Amir in Huda Zoghbi's lab, which IRSF’s legacy foundation funded, has changed the research landscape and has allowed us to accelerate toward a cure!

CEO Melissa Kennedy was honored to join leaders from around the world at the #RareAsOne Network's annual meeting in San Diego. Thank you so much to @CZIScience for hosting this collaborative meeting and bringing the rare disease community together!

During the last week in April, we welcomed more than 500 members of the Rett community to the ASCEND 2022 Rett Syndrome National Summit. Learn more about the ASCEND experience and ways you can now access the Resource Library at rettsyndrome.org/ascend2022reca…

We're excited to announce the addition of 4 clinics to our Center of Excellence network! They join a prestigious network of 18 clinics in the US dedicated to providing best-in-class clinical care. Learn more about this expansion & find a clinic near you: rettsyndrome.org/coe2022.

With the recent news about trofinetide’s NDA submitted to the FDA, we are entering a new space for Rett syndrome: FDA Review. To answer your questions, join FDA expert, James Valentine & IRSF’s CSO, Dr. Dominique Pichard for this live webinar. Register: buff.ly/3JbFmYW"

Register for the IRSF RettEd Day at Kennedy Krieger! Join us in-person for a day of discussion, geared toward families in the local area wanting to connect with experts, with thanks to sponsor, Acadia Pharmaceuticals. Space is limited! Register: rettsyndrome.org/rettedday-kki2….

In anticipation of the FDA’s priority review of Trofinetide – the first potential treatment for Rett syndrome – we know the Rett community has questions. Watch our Q&A with Dr. Kathie Bishop from Acadia Pharmaceuticals for answers. youtu.be/nXJEOZUCoic

BREAKING NEWS - Neurogene Inc. just announced that the FDA approved their IND to launch a clinical trial for their #genetherapy treatment NGN-401. It will launch in the US in 2023 for pediatric females with #Rettsyndrome. Learn more here: buff.ly/3WB0xbP

"Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams into reality." Jonas Salk

In this first in our 3-part Q&A series, Dr. Dominique Pichard, IRSF Chief Science Officer, answers some of your most frequently asked questions about DAYBUE (trofinetide) and the treatment of #Rettsyndrome. WATCH: youtu.be/wcw-sF9mXo0

Advocating for Rett families is core to IRSF. We heard your concerns after Neurogene’s recent announcement. IRSF acted quickly, organized our COE Directors, and want to thank Neurogene Inc. for meeting with us and issuing a clarifying statement. Update: buff.ly/3oNt4jp.

Thank you Representatives!

Join us on May 23rd at 1 p.m. ET for a 1-hour live webcast featuring a panel of physicians who treat individuals with Rett syndrome. Submit your questions for consideration, learn more, and register, at buff.ly/3LZSlPl.

My Trofinetide Clinical Trial Experience webinar is available! Hear from parents whose daughters participated in the trofinetide clinical trials share their experience with the treatment, side effects, and changes they saw in their daughters. buff.ly/3pMJ2uH

We need your help! Contact your Members of Congress today and urge them to list Rett syndrome as a topic eligible for federal research funding. With our new Advocacy Tool, taking action is quick and easy! Visit rettsyndrome.org/advocacy to learn how!