Massachusetts Resources

Family Empowerment Representatives  | Treatment and Research Centers | MA State Agencies | Parent Recommendations


 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.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388

Ali Rule, volunteer Family Empowerment Representative  Arule308@yahoo.com  1-603-682-1857


Treatment and Research Centers


Clinics

Rett Syndrome Program/ Children's Hospital Boston 

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. 

 Clinical Trials

Please contact clinical trial sites for current enrollment status.

 

 

Natural History Study

 

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

Marriott is working on establishing discounts for hotels near our clinical trial sites.  For more information, contact Ashley Lucchese, Marriott Sales Executive Ashley.Lucchese@Marriott.com 

Nearby hotels include:  Residence Inn Boston Back Bay/Fenway & Courtyard Boston Brookline

 

Biobanking of Rett Syndrome and Related Disorders

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, contact Lindsay Swanson  Lindsay.Swanson@childrens.harvard.edu 


 State Agencies - Massachusetts


Local Service Agencies

State of Massachusetts Department of Developmental Services (DDS)

DDS is dedicated to supporting individuals with disabilities. Click for an introduction of services availoable through DDS.

DDS Directory

Use this directory to find the DDS office closest to you.

Seven Hills Foundation

 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)

 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). 


Handicap Placard

Massachusetts Registry of Motor Vehicles

Applications for Disabled Parking are available at all branch locations, at the Medical Affairs office, Haymarket branch; and online. Complete the application and have it certified by a medical professional. 

Massachusetts RMV FAQ


State Medicaid 

MassHealth

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

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)

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

Massachusetts Department of Elementary and Secondary Education

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

Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.

Massachusetts Court System

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


Transition to Adult Services

Massachusetts Department of Elementary and Secondary Education

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

1-617-204-3600


Parent Recommendations

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


 Medical Professionals

ClinicalTrials.gov

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.

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

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 ( PT, OT, Speech, Hippotherapy and Aquatherapy)

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.  

Tanya Scott, MS, CCC-SLP

1-617-780-5193

Provides private AAC and SLP services. Tanya also consults with schools and scan help new teachers program the Tobii. Tanya is TERRIFIC.  She also works closely with Alycia Berg at Children’s.  

Kate Ahearn - Assistive Technology Specialist/Special Education Teacher

Kate is local to the Boston area and runs a weekly AAC voices get-together for local Rett girls to chat with each other on their Tobiis. It’s awesome!

Facebook page: AAC Voices - Groups, Outings, Trainings

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

The ARC of Massachusetts

 1-781-891-6270

The ARC assists families with supports and services in the community. arcmass@arcmass.org 

Disability Law Center of Massachusetts (DLC)

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.


Recreation 


More Parent Recommendations

Massachusetts IRSF Rett Syndrome Families Facebook page

Rett Syndrome Association of Massachusetts

DDS Family Support Centers 

1-508-796-1850

Services are offered by staff working out of Family Support Centers in Greenfield and Athol, MA. Primary supports offered are service navigation, information and referral, family trainings and support groups, community connections, social/ recreational opportunities, educational and service advocacy. Families prioritized by DDS may also be able to access short-term financial assistance to pay for goods and services that benefit the individual with a disability.  

Elizabeth Bostic, The Parent Coach, LLC

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)

 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