Rett Syndrome Angels

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
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Premier Showing of RSAM’s Sibling Video
2020-10-10 00:00 - 23:59
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!

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Our Kick-Off Event
2020-10-03 12:00 - 16:00
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
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Boston Marathon is Virtual
2020-09-14 00:00 - 23:59
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
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
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
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

Crimson/RSAM Swim Program
2019-12-14 14:00 - 15:00, 2019-10-05 14:00 - 15:00, 2019-09-14 14:00 - 15:00
Sept 14, 2-3pm
October 5, 2-3pm
December 14, 2-3pm
West Suburban YMCA
276 Church Street
Newton, MA
If you plan to attend this event, please send your confirmation email to iglad@rcn.com

BLUE SKY DAY 2019
2019-10-26 10:30
Saturday, October 26, 2019 – 10:30am

An outdoor event to honor our children, gather with RSAM families, Rett researchers and members of the Boston Children’s Hospital Rett Program. Lunch will follow. Please plan to attend and to continue the Blue Sky tradition here in Boston.

New This Year, “Blue Sky Day Purple Sky Night”
This year the city of Boston is again helping to bring more awareness to Rett Syndrome. The evening of October 26th, Boston City Hall and City Hall Plaza, The Top of the Prudential Building and the Zakim Bridge will all be lit up purple. If you are in town, be sure to catch the sights and make sure to tell all your family and friends as well.

Research Update from Rett Syndrome Research Trust
2019-09-24 19:00 - 21:00
Research Update From Rett Syndrome Research Trust
September 24th, 7pm
79 Robbins St., Acton, MA
Please join for a presentation from Tim Riley, Chief Scientific Office for RSRT. Tim will provide an update and overall review of RSRT’s Roadmap to a Cure. Tim will be joined by Jonathan Watts from UMass Medical School, presenting his MECP2 DNA and RNA editing project.
Please RSVP: info@rsam.org

Save the Date: RSAM Annual Family Picnic
2019-06-30 00:00 - 23:59
RSAM’S THIRD ANNUAL FAMILY BBQ
We are so excited for this day! Our Family BBQ is super fun! See old friends, make new ones. Eat an amazing BBQ feast, enjoy fun lawn games. Relax and Enjoy the simple pleasures of summer!
If you have not replied yet, please do it NOW.
We need a headcount in order to move ahead with planning.
Sunday, June 30
12 Noon to 4:00 pm
North Attleboro Elks Lodge
52 Bullfinch Street
North Attleboro, MA
Rain or Shine
THIS IS A FREE EVENT FOR THE WHOLE FAMILY!
A delicious barbecue lunch, a scenic location (with the option of moving indoors if needed), music, games, prizes and fun!
A day to connect with families in MA and elsewhere living with Rett syndrome and Rett related disorders.
Our past RSAM Family BBQ’s were well attended and received rave reviews!
RSVP here or to iglad@rcn.com
Please tell us how many adults will be attending and how many children.
If you will be providing your child’s food, please let us know.
Thanks and See you on June 30th at the BBQ!
