Massachusetts

Family Empowerment Representatives

Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.

National Family Empowerment Representative

Samantha Brant – Family & Community Engagement Manager, Rettsyndrome.org
sbrant@rettsyndrome.org  1-913-221-8157

Treatment and Research Centers

Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.

Clinical Trials

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.

Natural History Study

Visit Natural History Study Website

Boston Children’s Hospital
1-617-355-5230 Lindsay Swanson
For information on the study, contact Lindsay Swanson at RettResearch@childrens.harvard.edu or call.

Travel Assistance for NHS Sites – 1-781-333-1593
Nearby hotels include:  Residence Inn Boston Back Bay/Fenway & Courtyard Boston Brookline

Biobanking of Rett Syndrome and Related Disorders

Visit Biobanking of Rett Syndrome and Related Disorders Website
1-617-355-8994
The purpose of this study is to advance understanding of the natural history of Rett syndrome (RTT), MECP2-duplication disorder (MECP2 Dup), RTT-related disorders including CDKL5, FOXG1, and individuals with MECP2 mutations who do not have RTT. Samples with DNA will be collected. This study will be conducted at Boston
Children’s Hospital.  It is led by Mustafa Sahin, MD, PhD.

For more information, email Lindsay.Swanson@childrens.harvard.edu.

Clinics

Rett Syndrome Program/ Children's Hospital Boston

Visit Rett Syndrome Program/ Children’s Hospital Boston Website
1-617-355-5230
The Rett Syndrome Program brings together a team of professionals who specialize in treating patients with Rett syndrome. Acting Clinic Director is Dr. David Urion (specializing in neurology) and the Research Program Director is Dr. Mustafa Sahin (specializing in neurology).  To contact the Rett Syndrome Program, email RettResearch@childrens.harvard.edu or call.

State Agencies & Resources

Local Service Agencies

State of Massachusetts Department of Developmental Services (DDS)

Visit State of Massachusetts Department of Developmental Services Website
DDS is dedicated to supporting individuals with disabilities. Click for an introduction of services available through DDS.

Seven Hills Foundation

Visit Seven Hills Foundation Website
1-508-755-2340
Seven Hills Foundation provides exceptional integrated clinical, educational and community-based supports to children and adults with disabilities.
Seven Hills Locations

Massachusetts Rehabilitation Commission (MRC)

Visit Massachusetts Rehabilitation Commission Website
1-800-245-6543
MRC is responsible for vocational rehabilitation services, community living services, and eligibility determination for Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

State Medicaid

MassHealth

Visit MassHealth Website
1-888-665-9993
In Massachusetts, Medicaid and Children’s Health Insurance Program (CHIP) are combined into one program called MassHealth. Call to enroll.

Kaileigh Mulligan Waiver

Visit Kaileigh Mulligan Waiver Website
Enrollment Center 1-800-841-2900
The Kaileigh Mulligan Program provides MassHealth services and benefits to certain children with severe special needs who are over the income standards for MassHealth eligibility and require the same level of ongoing nursing and medical needs as a child living in a pediatric nursing home or hospital. There are currently 198 children enrolled in this program. To enroll, call the Mass Health Enrollment Center and ask for Kaileigh Mulligan; or talk to your child’s hospital social worker or case manager.

Early Intervention

Early Intervention in Massachusetts (EI)

Visit Early Intervention in Massachusetts Website
1-800-905-8437
EI is a statewide, developmental service provided to families of children ages birth through 3. Children may be eligible if they have developmental difficulties due to disability or if typical development is at risk. Call to apply.

Education

Tanya Milette, ED.M, Special Education Advocate

Visit Tanya Milette, ED.M, Special Education Advocate Website
From goals and objectives to evaluations and reports, from IEP meetings to visiting potential placement options; the world of Special Education can be overwhelming for parents. Tanya Milette, Special Education Advocate is here to help you help your child.

Massachusetts Department of Elementary and Secondary Education

Visit Massachusetts Department of Elementary and Secondary Education Website
Massachusetts Department of Elementary and Secondary Education accommodates children between the ages of 3 and 21 in the public-school system. Check with your local school district for information specific to your area.

Conservatorship

Massachusetts Court System

Visit Massachusetts Court System Website
The Massachusetts Court System website has information on guardianship for individuals with disabilities.

Transition to Adult Services

Massachusetts Department of Elementary and Secondary Education

Visit Massachusetts Department of Elementary and Secondary Education Website
1-781-338-3375
Massachusetts Department of Elementary and Secondary Education can help with transitioning your child to post-secondary opportunities. This transition should begin no later than the first IEP after the student turns 14.

A Family Guide to Transition Services in Massachusetts

Visit A Family Guide to Transition Services in Massachusetts Website
1-617-204-3600

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org.

Medical Professionals

Dr. Sasha Djukic, Children’s Hospital at Montefiore, Bronx NY

718-920-4378
For newly diagnosed I highly recommend visiting Dr. Sasha Djukic at the Children’s Hospital at Montefiore Bronx NY. She spent 3 hours with us explaining what Rett is and what it isn’t, drawing pictures for us, presenting research and providing optimism. We then spent an additional hour with Elaine Williams SLP at Montefiore who introduced us to PODD and the Tobii and we have been using this communication strategy ever since. Both Dr. Djukic and Ms. Williams were so responsive via phone and email. Dr. Djukic even attended our early intervention meetings via phone. After a few years under her care we then felt a more local presence was more important for us and so we transferred to Boston Children’s Rett Program under Dr. Urion which has been terrific.

Therapy

Dr. Alycia Berg, MS, CCC-SLP

781-216-2209
Boston Children’s Hospital (Waltham).  She books months out but is worth the wait. She is excellent with eye-gaze technology and knows Rett syndrome very well.

Karen Veilleux PT, DPT

1-978-287-8287
Karen is a Pediatric Physical Therapist with Emerson Center for Rehabilitative & Sports Therapies in Concord. Emerson Hospital just opened a brand-new pediatric facility with a therapy pool. Karen has been instrumental in directing us toward things we needed like orthotics. kveilleux@emersonhosp.org

Legal Resources & Information

The ARC of Massachusetts

Visit The ARC of Massachusetts Website
1-781-891-6270
The ARC assists families with supports and services in the community. arcmass@arcmass.org

Disability Law Center of Massachusetts (DLC)

Visit Disability Law Center of Massachusetts Website
Boston 1-617-723-8455
Northampton 1-413-584-6337
The DLC is a private, non-profit organization responsible for providing protection and advocacy for the rights of Massachusetts residents with disabilities.

Additional Resources

Rett Syndrome Association of Massachusetts

Visit Rett Syndrome Association of Massachusetts Website
Rett Syndrome Association of Massachusetts, Inc. (RSAM) is a non-profit organization that was founded by parents at a time when little was known about the disorder. Its mission, from its inception, has been to provide support and information to families of girls and boys with Rett Syndrome; raise funds to accelerate biomedical research; and to raise public awareness among medical and educational communities.

Rare New England

Visit Rare New England Website
RNE aims to bridge the gap between patients and families, clinics and clinicians, and the many resources available to them by existing government programs, advocacy organizations and patient groups, and state agencies, in the New England area.

Elizabeth Bostic, The Parent Coach, LLC

Visit Elizabeth Bostic, The Parent Coach, LLC Website
1-617- 592 -3852
Elizabeth was instrumental in helping us through the IEP process and getting our daughter into her local public school rather than a substantially separate special needs school she was at before. Elizabeth has a great non-confrontational approach and was able to help everyone at the table come to agreement on what’s best for our daughter!

Minute Man ARC Early Intervention (Concord, MA)

Visit Minute Man ARC Early Intervention Website
1-978-287-7900
Minute Man Arc is the agency of choice for children and adults with disabilities in our region, providing a community of innovative, lifelong care. We achieve this by delivering exceptional therapeutic services, meaningful employment, supportive living opportunities, recreation, and active community involvement.

Nick Grigorieff ABC Certified Prosthetist, Orthotist, CPO

1-978-371-1684
Orthotics, braces, etc. in Concord, MA. Concord Orthotics and Prosthetics. Nick is absolutely fantastic. Has great recommendations and is very helpful.

A Family Guide to Transition Services in Massachusetts

1-617-204-3600