Rett Syndrome Angels

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

STAY SOCIAL (follow us)

Scientific/Research Webinar
2020-10-17 00:00 - 23:59 (America/New_York)
Download the Agenda for the BCH Rett Scientific Symposium
Look at the progress Rett research has made in the last ten years!
Thank you to Dr. Michela Fagiolini for spearheading this virtual event.
She is gathering prominent researchers and clinicians who will participate, presenting information and answering your questions.
This is sure to be a great opportunity for us. Make sure to sign up to get the updated information as we announce it!
Sign-Up to View our Virtual Event
Click Here
STAY SOCIAL (follow us)

Premier Showing of RSAM’s Sibling Video
2020-10-10 00:00 - 23:59 (America/New_York)
Great thanks to Sara Anastasi and Hannah Sweeney two of our 2020 Sibling Scholarship recipients and Michael Anastasi for creating this video starring 14 of our RSAM families. Get your popcorn ready for this at home theater event. This touching and beautiful video is one you don’t want to miss!
We definitely give it FIVE stars!
We will share the private link closer to the date!

Sign-Up to View our Virtual Events
Click Here
STAY SOCIAL (follow us)

Our Kick-Off Event
2020-10-03 12:00 - 16:00 (America/New_York)
In-Person Family Gathering Observing COVID Precautions
All our New England Families are invited to a Celebration Beach Bash and Family Picnic!
Professional Family Pictures will be taken on the beach! Bring your favorite props and flip flops.
Jessica & Tom Henry are offering 10 family edited portraits for $10 dollars, in honor of our 10th Year of Blue Sky Day.
Let’s get together outside and enjoy much needed fun in the sun.
When: October 3rd from noon to 4pm
Where: Waterford, CT at a beautiful, accessible seaside location!
(RSVP is REQUIRED)
Deadline Sept. 26th, 2020
R.S.V.P. Here
https://forms.gle/KYQ1Bez87FcPLyX86
STAY SOCIAL (follow us)

Boston Marathon is Virtual
2020-09-14 00:00 - 23:59 (America/New_York)
We are saddened that our Boston Marathon 2020 in person was cancelled. “In the absence of the usual in-person marathon, the Boston Athletic Association announced that it will hold a “virtual” race for the would-be participants.” Our runners continued to train and pushed themselves for the love of our girls and boys living with Rett Syndrome. The announcement came that participants in the virtual marathon will be required to complete a continuous marathon within a six-hour time period any time between September 7 and 14 and show their solo run using an app. Three of our marathon runners signed up for the virtual run to be able to earn their medals and awards. An extra shout out to Maurice, Meredith and Richard we wish we could cheer you on at the finish line in person, know we are your biggest cheerleaders! Sending you some love below!
Rooting for our RETT TEAM for all their perseverance and commitment.
Your Cheerleaders are sending...
BIG THANK YOU’S

And we hope next year in 2021 we can cheer you on in person!
RSAM is always on the look out for new runners. Perhaps you want to start training now and apply for a spot, TEAM RETT is preparing for 2021. Contact us if you would like to run for our nonprofit.
Please click the link below to learn more about each of our amazing runners, dedicating themselves to run on behalf of RSAM and raise awareness and research funds for possible treatment of Rett syndrome and a hopeful cure one day. Thank you to all our runners!!
https://www.crowdrise.com/o/en/campaign/rett-syndrome-association-of-massachusetts
https://charity.gofundme.com/o/en/campaign/rett-syndrome-association-of-massachusetts

Marathon Application
Credit Card Agreement

New Balance Falmouth Road Race (UPDATED)
2020-08-16 09:00 - 17:00 (America/New_York)
Welcome to the 2020 New Balance Falmouth Road Race Numbers For Nonprofits Program! This year we are celebrating the 48th running of the race and for 22 of those years, the Numbers for Nonprofits Program has been an integral piece of this event. Our amazing nonprofit runners raise millions of dollars for participating organizations every year and we know this year will be no different. Thank you to all the runners who have chosen to dedicate themselves to supporting these nonprofits and thank you to all who donate!
UPDATE
The New Balance Falmouth Road Race for 2020 is going VIRTUAL! Please click through and learn more! RSAM is very excited to still participate in this event and there are more options for us to add interested runners.If interested please email us at: rettsyndromemassachusetts@gmail.com
Read Press Release »

Rett Family Picnic
2020-07-05 00:00 - 23:59 (America/New_York)
Due to COVID-19
Our Annual RSAM Family Picnic 2020 is postponed until we can get together safely.
Please stay tuned for the new date in 2021!

RSAM/Crimson Aquatics Swim Program
2020-03-31 14:00, 2020-02-29 14:00, 2020-01-25 14:00 (America/New_York)
The one hour, no cost, swim sessions are held at 2:00pm at West Suburban Y in Newton. For information and to join this wonderful program contact Irene at iglad@rcn.com
Open to “Rett Swimmers” of all ages and abilities.
Dates for upcoming RSAM/Crimson Aquatics Swim Program
1/25
2/29
3/21
