History of Rett Syndrome Association of Massachusetts
The Early Years, 1987-1997
Rett Syndrome Education Center
Dr. Andreas Rett first described Rett syndrome in 1965, but it was almost twenty years later, in 1983, that physicians in America became aware of this condition. It did not take long after that, however, for a small group of families in Massachusetts, whose young daughters had been recently diagnosed with Rett syndrome, to join forces. Some of these families had spent years searching to learn why their daughters were not developing as expected. Various diagnoses were given, but none seemed to fit, until they heard about Rett syndrome. After feeling very isolated in their search and struggles, now these families felt they were not alone.
A group of about six families along with special education professionals and others with interest in Rett syndrome began to meet in Bedford, Massachusetts. After months of meetings and discussion, the Rett Syndrome Education Center of New England, Inc. (RSEC) was officially established in 1988. As stated in RSEC’s first pamphlet, “presently girls with Rett syndrome have been educated in a variety of settings with differing approaches. RSEC has and will continue to bring together educators and therapists to investigate the effectiveness of these approaches and identify new teaching strategies. RSEC has also established an information center for parents and professionals, holds monthly family support meetings and is dedicated to increasing public awareness.”
In 1989 the group moved its meeting location to the MassARC building in Waltham and set up an office there. They now had a more central location and their own phone line and answering machine. Other families became aware of RSEC and the number of families involved was increasing. This “pioneering” group of families established one of the first groups of its kind in the country. Many of the families involved in those early years are still members of what is now the Rett Syndrome Association of Massachusetts. We recognize Leo Blanchette, Jane Ambash, Diane and Scott Hughson, Mary Wood and John Costello who served as officers in the early years.
The members of RSEC set as a primary goal the establishment of a school program specific for girls with Rett, a program that would provide the best experience for their children while serving as a “laboratory” for educational research. In July 1990, after great effort, but with amazing speed, the RSEC was able to establish a Rett syndrome classroom. This classroom was within the League School in Newton, a school that served children on the autism spectrum. This was the first educational institution in the country with a program specifically designed to meet the needs of girls with Rett syndrome. The Rett classroom was designed for six to eight children and covered a wide age range.
Due to funding, travel distance and various other issues, the League School’s Rett classroom had a short life span. After approximately two years the classroom was disbanded, but RSEC continued on, now focusing on different goals.
RSEC began to raise funds to support expanding Rett research and to provide programming for its families. In 1988 RSEC held its first fundraiser, a dance, and in 1989 the first RSEC t-shirt was created and sold. In 1991 RSEC secured the first proclamation declaring Rett Syndrome Awareness Week in Massachusetts and the following year held a one day conference at the Wellesley College Club for parents and professionals featuring therapists, educators and physicians who had familiarity with this newly recognized syndrome. In 1996 RSEC ran its first “Roll for Rett” the proceeds of which went primarily to supporting Rett research. The “Roll for Rett” was RSEC’s primary fundraiser until 2003. Then, for several years, the “Chef’s Classic” event in Sharon, MA, established by Chuck and Paula Curley, was the main research fundraiser.
There were many opportunities for families to gather together during those early years. An autumn barbecue, holiday gatherings and a spring family lunch were routinely on the calendar. Meetings and gatherings often included poetry readings by RSEC Board Member Dr. Allen Crocker, Director of the Developmental Evaluation Center at Boston Children’s Hospital.
In 1997, since the focus of the group was no longer on education, RSEC was renamed the Rett Syndrome Association of Massachusetts (RSAM) with the understanding that families and professionals from beyond Massachusetts were always welcome to be part of RSAM.
The Story Continues, 1998-2020
Rett Syndrome Association of Massachusetts
As greater numbers of children received a Rett syndrome diagnosis, RSAM’s membership grew. For close to fifteen years RSEC/RSAM held monthly meetings. These meetings often featured speakers, and they always provided family support and the sharing of knowledge and experiences. The business of raising funds and event planning occured and there was always eating!
Over the years, the internet and social media have brought new and often easier options for receiving information, for sharing information and for connecting with other families. Though our in person meetings have decreased in recent years RSAM has remained committed to providing a place for families to connect through Facebook and Twitter and to keep up on Rett happenings through online newsletters and the RSAM website. New families and friends can always contact a board member through the website (RSAM.org). RSAM continues to hold family gatherings such as the Annual Picnic, Annual Blue Sky Day, and educational programs and workshops.
2020 marks RSAM’s 10th anniversary of its Blue Sky Day program as families once again celebrate and honor their children as they rise to face the challenges of Rett syndrome. The name of this event was originally Blue Sky Girls, but was changed locally by RSAM, in recognition of the boys who were now also being diagnosed with Rett. Although primarily virtual because of the Pandemic, the 10th Blue Sky Day celebration includes a “World Family Celebration,” a science symposium, organized by Harvard Medical School researcher, Michela Fagiolini, Ph.D., and more.
The RSAM Officers and Board Members are an active group who meet monthly to insure that RSAM continues in its mission to improve the lives of those impacted by Rett syndrome. We are very grateful to the dedicated members of our RSAM community who continue to take on leadership roles as RSAM officers and Board Members.
In 2007 the Rett Program opened at Boston Children’s Hospital and members of RSAM served on an advisory board to the clinic before and for a time following the start of the hospital’s program. RSAM continues to enjoy a collaborative relationship with the Rett Program at Boston Children’s Hospital. RSAM has collaborated with and supported other organizations that share a commitment to the Rett community. These organizations include Rett Syndrome Research Trust, Rettsyndrome.org, Girl Power 2 Cure, and Rettland Foundation.
In 2011, due greatly to the efforts of Maria McTernan, RSAM received five entries to have a team participate in the Boston Marathon. Every year since then RSAM has been fortunate to be able to have a Boston Marathon team that trains hard and raises funds to continue the work of RSAM. The funds raised through the Marathon have enabled RSAM to contribute to ground breaking Rett syndrome research taking place in Massachusetts. The Marathon funds have also allowed RSAM to provide family programming and events and to support endeavors such as the Sibling Scholarship program established in 2020. We are also grateful to the runners who have participated in the Falmouth Road Race on RSAM’s behalf in recent years.
Since 2016, RSAM and Crimson Swim Aquatics have sponsored a monthly swim program. Michela Fagiolini, Ph.D. spearheaded this program that has brought our children an enjoyable, therapeutic experience. Our Annual Red Sox Night (when not cancelled because of the Pandemic) is a fun family outing and our participation in the Prudential Center’s 31 Nights of Light in 2015 provided RSAM with its first opportunity to see purple lights shine over Boston to increase Rett syndrome awareness. Since then we have had several other such nights, thanks to Boston’s Mayor Walsh.
For a Rett syndrome organization our history has been long.
It is our hope that one day soon “Rett syndrome will be history,” but until that time RSAM will be here for the families of Massachusetts and beyond.