Giving Tuesday-Rise Above Rett
2024-12-03 00:00 - 23:59 UTC
Join Rett Syndrome Angels this Giving Tuesday on December 3, 2024 to Rise Above Rett!

#GivingTuesday, support #RettSyndromeAngels, #riseaboverett
Over 95% of our proceeds impact our mission directly to our families and community

Your meaningful contribution will enrich those living with Rett Syndrome

Giving Tuesday-Rise Above Rett

Give to Rett

Operation Valentine Sign-Ups
2025-01-01 08:00 - 2025-01-18 12:00
Our most heartfelt event is back for 5 years straight

Any family living with Rett in any of the six New England States is eligible.

Remember siblings sign up if you love receiving special cards. Our card makers make several cards and there are plenty to go around! Regardless of age you can receive one too!

Operation Valentine is underway!

It’s easy and free.

Signup from January 1st till January 18th!

*pst you will receive multiple cards in the month of February

Any family living with Rett in any of the six New England States are eligible.

Scan or Click Below to Sign Up

click for card Receiver

click for Card Maker

Maria McTernan Sibling College Scholarships
2025-02-08 08:00 - 2025-04-12 12:00
Is now open!

Visit https://rsangels.org/sibling-scholarship/ for application and more information

PROJECT SWIM
2025-02-09 08:00 - 2025-02-12 12:00
A great opportunity for your child to exercise, socialize and have FUN!

This wonderful swim program for our Rett community began in 2016 under the leadership of Dr. Michela Fagiolini. Over the years the program has grown and expanded. The sessions are presently held at Blodgett Pool at Harvard University. The volunteer coaches are members of the Harvard Varsity Swimming and Diving Team or another Crimson Aquatics team and they are passionate about sharing their love of the water with others.

Participants of all ages are welcome. No swimming experience required.

Sign ups are now open for the next session which begins on February 16.

Sessions are usually held on Sunday afternoons.

For more information email adaptiveswim617@gmail.com

Rare Disease Day
2025-02-10 06:00 - 2025-02-28 12:00
Rett Syndrome Awareness: Rare Disease Day 2025

Every year on February 28th, we come together to observe Rare Disease Day, a global event dedicated to raising awareness for the over 7,000 rare diseases that affect millions of people worldwide. Today, we highlight Rett Syndrome—a rare neurological disorder that profoundly impacts individuals and families around the world.

What is Rett Syndrome?

Rett Syndrome is a rare genetic disorder that primarily affects girls, leading to a period of normal development followed by the loss of purposeful hand movements, speech, and motor skills. Individuals with Rett require lifelong support, yet research continues to bring hope for treatments and a cure.

Although October is Rett Syndrome Awareness Month, Rare Disease Day gives us another opportunity to shine a light on Rett and amplify our voices for change.

Why Awareness Matters

Even though Rett Syndrome is considered rare, its impact is life-altering. Raising awareness helps to:

Advance research: More awareness leads to more funding and scientific breakthroughs.

Build community: Families affected by Rett need to connect and support each other.

Promote advocacy: The more people know about Rett, the more we can push for policies, treatments, and resources.

Join Us: Rett Is Rare

This Rare Disease Day, we invite you to spread awareness by using our official Rett awareness profile picture on social media. Show your support by sharing the message that Rett is rare, and our community is strong.

How You Can Help:

✅ Post our profile picture on your social media accounts.✅ Use the hashtags #RettIsRare and #RettSyndromeAngels to start conversations and spread awareness.✅ Share your story if you or someone you love is affected by Rett Syndrome.✅ Support Rett research—every donation helps move us closer to a cure.

Together, let’s use Rare Disease Day as another chance to shine a light on Rett Syndrome and make an impact. Thank you for standing with us!

💜 #RettIsRare #RettSyndromeAngels

Virtual house call with Dr. Lieberman
2025-03-20 19:30 - 20:30
Rett Syndrome Angel’s Fifth Annual House Call with David Lieberman, MD,PhD,

Director of the Boston Children’s Hospital Rett Clinic

This Year’s Topic

“Updates in Rett Syndrome Gene Therapy Trials”

Zoom Program March 20, 2025 at 7:30pm EST

Dr. Lieberman will discuss the Neurogene and Taysha gene therapy trials taking place at Boston Children’s Hospital.

Dr. Lieberman will also discuss non-interventional studies that are being launched in the Boston Rett Clinic. In addition he can address questions regarding Daybue (Trofinetide) and other topics.

Don’t miss your Annual Visit!

REGISTER NOW FOR THIS VERY POPULAR VIRTUAL EVENT

Registration Closes March 15th

Sign Up Today

3rd Annual WooSox Family Day
2025-05-24 14:00
Swing by for a day you won’t forget! Private Buffet and Pavillon just for us! This family outing has become a popular event for the entire family. A private 2-hour buffet starting at 2:00 PM. and Pavillion seating at the Shaw’s Home Bullpen near the 3B/LF line. Worcester Red Sox vs the Durham Bulls starts at 3:05 PM. Access to a sensory friendly room, family restrooms and a fully accessible ballpark. Opportunity for “Catch on the Field” post-game… we hope to see you there!

Deadline May 5th, 2025 unless sells out first!

Register Below, Tickets are limited.

http://rsangels.betterworld.org/events/woosox25

A Home Run Event Courtesy of Acadia!

Tickets are going fast, Deadline is May 5th!

Equine Movement Experience
2025-06-08 09:00 - 11:00, 2025-07-20 09:00 - 11:00, 2025-08-24 09:00 - 11:00, 2025-09-21 09:00 - 11:00
Pre Registration Required

Sponsored by Acadia Pharmaceuticals

Sign up for a free 30 minute hippotherapy session with https://www.cloverphysicaltherapy.com/ in Pepperell, MA on Sunday mornings throughout the summer.

RS Angels Golf Tournament
2025-06-30 09:00 - 17:00 | Northern Spy Golf Club, 40 Scales Lane, Townsend, Massachusetts, 01469, United States
9:30 Shotgun Start

4-man scramble format

Dinner after golf

Contact Larry Fallon for questions: Larry@rsangels.org

Sand, Sun & Speaking Fun
2025-08-23 10:00 - 15:00
Rett Camp Day 2025

Location: Waterford, CTDate: Saturday, August 23, 2025 (10:00am to 3:00pm)Rain Date: This is a one-day event — there is no rain date.

A Day of Joy, Communication & Community

Join Rett Syndrome Angels for a full day of beachside fun and meaningful connection designed for individuals with Rett Syndrome and their families.

Activities Include:

🏊‍♀️ Swimming

🔍 Interactive scavenger hunt

💬 AAC and low-tech communication exploration

🏖️ Beach fun, community time, and more!

A licensed speech-language pathologist from Village Voices, will lead the scavenger hunt with built-in communication supports. Whether you’re new to the communication journey, need a refresher, or just want to join the fun—this day is for you. No experience needed!

Registration Information

$30 Registration Fee

Covers up to 4 people per family (immediate family/caretakers only)

Please note: Registration does not guarantee participation due to limited availability

If selected, you’ll receive an email with instructions to confirm your spot and pay the $30 final participation fee. Be sure to respond promptly—spots will fill quickly!

Last year’s event had a waitlist, so timely follow-up is key!

📣 Important Notes

All camp activities are designed to be accessible and inclusive

Low-tech communication boards will be available on-site

Held at the beach pavilion with full access to restrooms and shaded areas

Accessible playground

Questions?

Contact Maggie at Maggie@rsangels.org

Social Story for Rett Camp 2025

My Day at Rett Camp

😊 Going to Camp

Today I go to Rett Camp by the ocean. I will have fun with friends. When I arrive, we will do scratch art and hair fun activities. The helpers are nice and will take care of me. I can communicate with them using my AAC device, communication board, or in my own way.

📷 Picture Time

We will walk to the ocean to take a group photo. I can see the beautiful water. I can be in the picture with my friends, or I can choose to watch from nearby. I can tell the helpers what I want using my communication device or board. Both choices are great.

🔍 Scavenger Hunt Teams

The helpers will make teams for a scavenger hunt. I will be on a team with other campers. My team will help me look for special things. I can use my AAC device to share ideas with my team. We will work together and have fun.

🍎 Lunch Time

Time to eat! The RS Angels will bring snacks and food for lunch. I can eat what I like and leave what I don’t want. I can tell helpers about my food preferences using my communication device. There will be a comfortable place to sit and eat.

💦 Splash Attack

After lunch, we play with water in an activity called “Splash Attack.” I can use my AAC device to tell helpers if I want to get wet and play in the water, or if I prefer to watch my friends play. The helpers will keep everyone safe and respect my choices.

🏖️ Beach Fun Time

This is my free time at the beach! I can touch the sand, look for pretty shells, or just sit and watch the waves. I can communicate my choices using my AAC device or communication board. I choose what feels good for me. The helpers will stay close by and understand how I communicate.

👋 Time to Go Home

At the end of our fun day, it’s time to say goodbye. I will pack up my things and say goodbye to my new friends and helpers using my communication device, AAC board, or however I like to communicate. I might feel happy or sad – both feelings are okay.

🌟 What I Know About Rett Camp

• The helpers keep me safe all day • I can do activities in my own way • I can take breaks whenever I need them • All my friends at camp are unique and special • I belong at this camp • Everyone understands how I communicate • I can use my AAC device, communication board, or communicate in my own special way • The helpers know different ways to communicate and will listen to me

🌊 I’m going to have a great day at the beach with my friends! 🌊

THANK YOU TO OUR DONORS!

Everyone deserves the opportunity to engage fully in life’s activities. EaZyHold’s mission is to deliver innovative tools that support individuals with physical challenge. We are grateful for their donation to make our day CAMP-TASTASTIC!

THANK YOU VILLAGE VOICES FOR YOUR CREATIVITY FOR OUR EVENT!

Contact Maggie at Maggie@rsangels.org

REGISTRATION IS CLOSED

see ya at the beach

RettEd Day coming to Boston
2025-09-13 09:00 - 17:00
Join us for RettEd Day — immersive, full-day educational events happening at our Center of Excellence clinics nationwide. These special gatherings offer expert-led sessions, helpful local resources, and the chance to connect with other families and caregivers in your community. This event is going to be one you don’t want to miss! From 3:30-5:00pm there will be a social hour!

Click below on International Rett Syndrome Foundation below as the details unfold! We hope to see you there.

RettEd Day BCH

Livy's V.I.P. Dance
2025-10-05 14:00 - 17:00
A Royal Invitation

You’re cordially invited to dance, dine, and dress up with Ariel, Cinderella, Prince Eric, and Prince Charming! Join us for appetizers, dancing, and fairy tale fun. Dress like royalty if you wish, or come as comfortable as you’d like for our enchanted celebration – after all, true magic comes from within!”

Join us for a Royal Meet & Greet!

NEW LOCATION!

Wilbraham Senior Center, 250 Springfield Street. You must have ticket purchased to attend!

Meet Ariel, Cinderella, Prince Eric, and Prince Charming!

✨ Dancing

✨ Food

✨ Photos

✨ Magical memories

In honor of Olivia Hillario and to those who lost their life from Rett Syndrome

THANK YOU TO OUR EVENT DONOR!

RAFFLES AND SILENT AUCTION ITEMS ARE LINING UP NICELY!

Graciously Donated by Country Bank:

Raffle Rules: One raffle entry per event ticket purchased by 11:59 PM on September 10th (supportive donation tickets do not qualify for raffle entries). Winner will be randomly selected and announced at the event. Winner must be present at Livy’s VIP Dance to claim prize. iPad will be a brand new iPad available at time of drawing. This promotion is not affiliated with or endorsed by Apple Inc. All purchased event tickets made prior to deadline are automatically entered.

WE HAVE MORE AT THE EVENT!!

Email: Shanon (Event Director), mom to Livy (shanon.m.hardy@gmail.com

Email: Maggie (Donation/Sponsor Coordinator), mom to Mads (maggie@rsangels.org)

ROYALLY RESERVE TODAY!

Blue Sky Day
2025-10-25 10:45 - 14:00 | Boston Children’s Hospital Area
Don’t miss this very special Saturday when families gather in Boston to honor our children. There will be clowns, cheerleaders, music, a selfie station and more.

There is no charge for this day and lunch will be provided by Rett Syndrome Angels.

Register by October 16th!

Check out the highlight video from last year here
