Rett Syndrome Angels

Equine Movement Experience
2025-07-20 09:00 - 11:00, 2025-06-08 09:00 - 11:00 UTC
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 UTC | 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

3rd Annual WooSox Family Day
2025-05-24 14:00 UTC
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!

Virtual house call with Dr. Lieberman
2025-03-20 19:30 - 20:30 UTC
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

Rare Disease Day
2025-02-10 06:00 - 2025-02-28 12:00 UTC
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

PROJECT SWIM
2025-02-09 08:00 - 2025-02-12 12:00 UTC
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

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

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

Operation Valentine Sign-Ups
2025-01-01 08:00 - 2025-01-18 12:00 UTC
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

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

Spec Pond Picnic
2023-08-19 11:00 - 14:00 UTC | Spec Pond-Post Office Park Wilbraham, MA, 2540 Boston Post Road, Wilbraham, Massachusetts, 01095
FAMILY PICNIC @ Spec Pond

DATE: SATURDAY AUGUST 19TH, 2023

AUG 10th deadline to RSVP

LOCATION: 2540 Boston Post Road (Post Office Park), Wilbraham MA 01095

TIME: Family arrival 11-2pm (you can come stay for full day or part of the day)

COST: $4.00 per person for additional tickets- RSAngels will pay for 4 tickets per family.

LUNCH: Families are asked to bring their own lunch for their families

*RS Angels will be providing desserts (dietary restrictions are considered) and drinks*

DIRECTIONS: Once you get off the Mass pike (Ludlow or Palmer) it’s about 25 minutes from that exit to arrive at Spec Pond. It’s in the same plaza as our YMCA in Wilbraham. When you are facing the YMCA-(the building with faces)-turn RIGHT. You are now entering Spec Pond. Go straight til you hit the playground: turn LEFT. We are all the way at the end on the right-the only Pavillon spot

PLACES TO STAY: if you need a place to stay The Holiday Inn Express, Ludlow MA- is right off the pike and it’s clean, affordable and accessible for all! It would be about 10 minutes from our event.

ADDITIONAL INFORMATION: only Service dogs welcomed, therapy dogs will be asked to leave by the park staff. no alcohol allowed at any time,

This spectacular picnic is going to be like no other picnic, a low-key get together for time to become even more acquainted! But with lots to do!! There will be corn hole, music, volleyball, a small beach front (roll up only wheelchair to water), splash pad, and accessible park. We will not have access to the basketball or other fields surrounding our reserved space. We will be under our own pavilion all together, with access to a kitchen with a refrigerator (please mark your items if needed to use it). And an accessible bathroom right under the pavillion. Spec pond water and splash pad is fenced off allowing for assurance of safety-wanderers will be safe always. We can’t wait to see you!

Only for families living in the New England states

This incredible group has done it again! Making a generous contribution to the Family Picnic in Wilbraham and will be attending this event with us! If, you have questions about DayBue this is a great opportunity to talk to them in person, we encourage you to say hello regardless!!

Signups are required for everyone attending!

We hope you can join us and come see what surprises we have in stored for our families!!

REGISTER HERE

For questions: email Maggie@rsangels.org

Santa Stories
2022-12-22 19:00 UTC
Ho Ho Ho!Santa is Back! Our popular event is back for the 3rd time!

The Board at Rett Syndrome Angels want to end the year once again by giving our families a little magical experience. A time that can bring joy, comfort, hope and bring all of our inner child out with a little believing or make believing 😉

No matter what your religious beliefs are, the guy in the red suit can bring that to all of us. Santa will read a nondenominational story and a Christmas story. Everyone will sing with Santa and have a chance to ask him questions with in the hour on December 22nd at 7:00pm (eastern standard time). This exclusive invite is for all our families living with MeCP2 disorders no matter where you live! Our elves on the board have been chatting with Santa and he is excited to meet all of your children, beloved Rett Angels no matter their age.

Feel free to share this invite to other families on this Rett journey and every family can invite up to 2 friends or family members to join them on this very jolly occasion.

HAPPY HOLIDAYS! REGISTER HERE : https://tinyurl.com/2p8x4km8

Family Picnic & Blue Sky Day
2022-10-02 12:30 - 15:30 UTC
TWO Events ONE Day!

We are celebrating Blue Sky Day and a family picnic in person after 2 years. This event is outdoors at the beautiful Mass Audubon’s Broad Meadow Brook Conservation Center and Wildlife Sanctuary, Worcester MA. A central location for families to come together and have fun. Come meet our volunteer board members and doctors from Children’s, find out what is happening in the Rett world all the while meeting new and old friends.. RSAM will provide food and activities for all to enjoy. This event is free for all our families living in the New England states.

MUST RSVP TO COME! https://tinyurl.com/22BlueSkyDay

Team Rett Run @ the Boston Marathon®
2022-04-18 08:00 - 23:00 UTC
Team Rett is running at the Boston Marathon® representing RS Angels – support the team, support our efforts to raise awareness or simply support our fundraiser!

For more information, visit our official Team Rett page here.

You can follow along for current updates on our TEAM RETT Facebook page here!

OR if you’re a real go-getter you can just jump right to donating here!

Virtual House Call with Dr. Lieberman
2022-03-31 19:30 UTC
We welcome you to join us at RS Angels and Doctor David Lieberman, MD, PhD Assistant, Department of Neurology (Boston Children’s Rett Clinic) in your home virtually on March 31st at 7:30pm EST. Dr. L will be talking about Covid, Rett Clinic Updates, Boston Children’s Rett Research Projects, Upcoming Clinical Trials and as always there will be time for questions and answers from our caregivers.

CLICK TO RSVP HERE

Rett is Rare Disease Day Campaign
2022-02-28 06:00 - 23:00 UTC | All your social media platforms
Join Rett Syndrome Angels & Rare Disease Day Campaign!(2.28.22)

Rett syndrome is a rare, devastating disease affecting a special person in my life. Please help make Rett syndrome not rare, but gone!

Share now until Feb. 28th!

Spread the word and share.About a disease that is rare. Increase awareness of Rett syndrome and please let others know of this campaign by sharing through your social media.

In honor of Rare Disease Day 2022 we are asking you to help our Team Rett Marathon Runners. They are dedicated to raising awareness of Rett syndrome and to raising funds for our Rett Angels for programming, enrichment and research. Please help support them as they are working to support our loved ones.

Every size donation brings us closer to treatments and a cure!

Please read the compelling stories from the 5 members of Team Rett who will be running in the 2022 Boston Marathon®. Please donate to one or more of these dedicated Rett Runners.

Donations can be made by this link: Team Rett Link

Blue Sky Day and Family Picnic
2021-10-23 11:30 - 15:30 UTC
TWO DAY EVENTS-FREE! Blue Sky Day and our first Halloween Picnic. Join us for a COVID friendly get together, families bring their own picnics and RS Angels will provide the rest! We will have monster mash dancing, speakers, pumpkin decorating and so much more. These joined events are all about fun and enjoying much needed face to face time together. Don’t forget to dress up in your costume!

RVSP as soon as possible BUT no later than Oct. 18th.

Click link to RSVP:

https://forms.gle/d5WLcvrvWCMN1Z8J6

Team Rett Run @ the Boston Marathon®
2021-10-11 08:00 - 17:00 UTC | Boston Marathon, E Main St, Hopkinton, Massachusetts, 01748, United States
Team Rett is running at the Boston Marathon® representing RS Angels – support the team, support our efforts to raise awareness or simply support our fundraiser!

For more information, visit our official Team Rett page here.

You can follow along for current updates on our TEAM RETT Facebook page here and our Facebook EVENT page is here.

OR if you’re a real go-getter you can just jump right to donating here!

Stay tuned....March Monthly Family Check In
2021-03-26 19:30 UTC
Stay tuned for March topic…. (wishes can come true)

Come join other Rett Syndrome Angels families for an informal evening to chat. Often parents lead the way on conversational topics. These meetings give families opportunities to get much needed support on the many struggles from day to day living with Rett. Wear your pajamas, bring your beverage, snack of choice and get resources, tips or just a lending ear from parents living this journey with you.

R.S.V.P. two days prior to the event to get details on how to join us.

Email: irene@rsangels.org

The Green Nurse
2021-02-26 19:30 UTC
We have been seeing a lot of talk by families on different forums about cannabis, it’s a topic that is not fully understood nor much information is out there for Rett Syndrome. Our hope at Rett Syndrome Angels is to help with that. So many variants, so many unknowns, what is the difference between CBD oil versus THC? How to find the balance?

Let’s look at the word “endocannabinoid.” “Cannabinoid” comes from “cannabis,” and “endo” is short for “endogenous,” which means that it is produced naturally inside of our body. So “endocannabinoid” simply means cannabis-like substances that naturally occur inside us. Confused? Us too, until we met The Green Nurse! Sherri Tutkus, RN, BSN and Co-Founder from the The Green Nurse will be providing information on approved products, services and the importance of finding synergy within the endocannabinoid system in our bodies. Hear about the endocannabinoid system and cannabinoid therapeutics and how they relate to Rett syndrome. In this virtual session there will be time for questions from our families. (a waiver must be signed to attend).

R.S.V.P. two days prior to the event to get details on how to join us.

Email: irene@rsangels.org

R.S.V.P. two days prior to the event to get details on how to join us.

Email: irene@rsangels.org

Rett Syndrome and the Pandemic (Monthly Virtual Family Check In's)
2021-01-29 19:30 UTC
Join us for a special time and a special family check in! Join Dr. David Lieberman, MD, PhD. from the Rett Program at Children’s Boston Hospital on a much needed topic, Rett Syndrome and The Pandemic! Come listen to the newest information on the vaccine and other COVID issues relevant to families living with Rett Syndrome. As always, our family check in’s are an informal evening to chat. These meetings give families opportunities to get much needed support on the many struggles from day to day living with Rett. Wear your pajamas, bring your beverage, snack of choice. There will be time for questions and answers with the doc! This discussion will not be recorded.

R.S.V.P. two days prior to the event to get details on how to join us.

Email: irene@rsangels.org

R.S.V.P. two days prior to the event to get details on how to join us.

Email: irene@rsangels.org

R.S.V.P. two days prior to the event to get details on how to join us.

Email: irene@rsangels.org

Operation Valentine
2021-01-26 12:00 - 2021-02-05 12:00 UTC
Secret Valentine During Quarantime

Operation Valentine mission is under way…..Best Buddies and Rett Syndrome Angels have partnered!!

Are you a Rett Angel that wants to get a secret valentine? We are honored and lucky to partner with a few Best Buddies chapters. These students are making valentines for you! The love is all around us, get some beautiful one of a kind valentines in the mail. This is limited to our New England families living in Connecticut, Massachusetts, Maine, New Hampshire, Rhode Island and Vermont. This is a wonderful way to start a new friendship, maybe even pen pals! Our girls and boys deserve some extra kindness, some extra love and more friends!

DEADLINE: February 5th by noon!

Email: budd0806@gmail.com

Maria McTernan Sibling Scholarship
2021-01-21 00:00 - 2021-03-01 23:59 UTC
Read more about the scholarship here – or click on the link below to fill out the form.

Monthly Virtual Family Check In's
2021-01-20 19:30, 2020-12-16 19:30, 2020-11-18 19:30 UTC
Come join other Rett Syndrome Angels families for an informal evening to chat. Often parents lead the way on conversational topics. These meetings give families opportunities to get much needed support on the many struggles from day to day living with Rett. Wear your pajamas, bring your beverage, snack of choice and get resources, tips or just a lending ear from parents living this journey with you.

R.S.V.P. two days prior to the event to get details on how to join us.

Email: irene@rsangels.org

ABLE ACCOUNTS/SPECIAL NEEDS TRUSTS (WEBINAR)
2020-12-03 19:30 - 20:30 UTC
During this webinar caregivers/guardians will learn ways to secure your loved ones financial future. Annette Hines, ESQ from the Special Needs Law Group of Massachusetts has graciously offered to present and offer guidance. An important topic for all of us families; as we think about the future. Annette will explain the difference between Special Needs Trusts and ABLE Accounts and after the presentation there will be time for Q & A. We hope you can join us for this important topic.

RSVP by Nov. 30th to get webinar information

Email: irene@rsangels.org

Purple Sky Night
2020-10-24 19:00 - 23:30 (America/New_York)
PURPLE SKY NIGHT
The Grand Finale Saturday Evening
To further honor the children and adults with Rett syndrome and to recognize October as Rett Syndrome Awareness Month, the Boston sky will be lit in purple on the night of October 24. Purple is the color symbolic of Rett syndrome. Boston City Hall and Plaza, the Zakim Bridge and other Boston landmarks will glow in purple.

Thank you to Mayor Walsh for arranging these breathtaking views!
___________________________________

World Family Celebration
2020-10-24 10:30 - 12:00 (America/New_York)
BLUE SKY DAY
WORLD FAMILY CELEBRATION!

This one is one to remember…..

Once again, we will come together as a community to honor and to celebrate our very special children This year we will be watching and admiring from the comfort of our home starting at 10:30am EST.

Join in our virtual observance this year will be families from around the world who are also facing the challenges of living with Rett Syndrome.
We invite families from around the world to join us in this celebration of our amazing children. There are two ways families can participate. We need your help to make this day amazing! The festivities will include videos/photos how amazing our rett angels are the tradition of honoring our children in a very personal way from around the world.

TIME TO CELEBRATE OUR ANGELS!
VIEWING INFORMATION:
10:30am united states
(Eastern Standard Time)
https://us02web.zoom.us/j/89371240017?pwd=[REDACTED]
Passcode: [REDACTED]
Or iPhone one-tap :
US: +13017158592,,89371240017#,,,,,,0#,,327783# or +13126266799,,89371240017#,,,,,,0#,,327783#
Or Telephone:
Dial(for higher quality, dial a number based on your current location):
US: +1 301 715 8592 or +1 312 626 6799 or +1 646 876 9923 or +1 669 900 6833 or +1 253 215 8782 or +1 346 248 7799 or +1 408 638 0968
Webinar ID: 893 7124 0017
Passcode: [REDACTED]
International numbers available: https://us02web.zoom.us/u/kcFl9RdwI9

Did you know Boston has continued on this event for ten consecutive years despite many challenges? Not even a Pandemic is going to stop us! It all started as Blue Sky Girls with an idea from Dr. Sasha Djukic from the Rett Clinic/ New York to have families from all over the world gather at the same time and climb stairs.
“Each year in October the Blue Sky Girls was an event that is celebrated at multiple sites around the world. The purpose of the event is to celebrate Rett Syndrome Month and the strength and will that girls with Rett Syndrome have shown to keep going no matter the odds and the difficulties they face every minute of their lives.
Climbing stairs is a symbolic gesture, because climbing takes you upward and forward even if it is difficult.” Just the past recent years, the name changed to Blue Sky Day as more boys have been diagnosed with this disorder.

The Boston Children’s Hospital Rett Program Team celebrating Blue Sky Day at our Purple Sky Night themed selfie station 2019.

Contact us: rettsyndromemassachusetts@gmail.com

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