The mission of the New Jersey Rett Syndrome Association is to contribute towards an improved quality of life for girls and women affected by Rett Syndrome, support families dealing with the disorder, increase awareness and support ongoing research for treatment and cure of Rett syndrome. We believe that by raising public awareness of Rett Syndrome we can foster public attitudes conducive to early diagnosis, intervention and treatment of our children as we encourage and support research for the cure of Rett Syndrome. We hope this website will link local families together, help provide some of the resources we all need for our children and keep everyone informed of the many events and activities in NJ. Please send us your pictures, videos and stories to share and contact us if you have ideas for something you would like to see added.

We look forward to hearing from you!

Leslie Greenfield Founder, Executive Director and Heather’s mom

Rett Syndrome Awareness Month

In celebration of Rett Syndrome Awareness Month, I’m excited to let you know that Acadia announced today a launch of a new awareness initiative called Rett Revealed. The initiative is part of a collaboration with Emily Shifflet, a 27-year-old artist living with Rett, to recognize and celebrate the individual experiences present within the Rett community. Whether living with Rett, caring for a loved one, advocating on behalf of the greater community or working to address the unmet needs of those impacted, every journey is made up of its own unique moments. Rett Revealed will engage the community to share these moments and create a platform to showcase the array of Rett experiences as a collaborative piece created by the Rett community.

We invite you to be part of this awareness initiative!

Visit RettRevealed.com
Upload a photo of any moment or favorite photo throughout October
Follow along on social media as the photos come together to reveal a mosaic based on a piece of Emily’s artwork

To participate in Rett Revealed, visit RettRevealed.com. To learn more about Emily’s remarkable life as a young artist, please visit her website, www.eyegazedesignsbyemily.com.

Rett Gala

We are sad not to be able to be with everyone tonight, but hope you will join us virtually at 12:00 this afternoon at virtual Rett Gala as we honor our our girls and thank our awesome volunteers. New Jersey families have been supporting Rett syndrome research with many events over the past 30 years raising over $2,000,000.00. NJRSA was established in 2007 and since then, has given 908,000.00 to the research funds at International Rett Syndrome Foundation and Rett Syndrome Research Trust and the Rett Center at Montefiore. We could not have done it without the help of all of you and especially people we are honoring today as well as our past honorees.

So please take a few minutes to join us at the virtual Rett Gala and if you have not already made a donation, please consider any amount you can.

THANKS AGAIN!!

Gala Invitation

Virtual Gala Donation

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Thank you for helping us raise $20,000.00 at our annual Strollathon!

For more info, go to:

www.strollathon.org/new-jersey

NJRSA is proud to collaborate with Dr. Theresa Bartolotta and Dr. Patricia Remshifski and the faculty and students of Monmouth University to create the Program for Research and Support for Rett Syndrome. Please click below to visit our site for more information about the services available to our families, as well as professionals and advocates interested in helping our children with Rett syndrome.