National Resources

There are many trustworthy, nation-wide services and supports available. Most resources included here are not Rett syndrome-specific, but legal support, funding resources and national special needs organizations can be invaluable. This list also provides information on donating your child’s blood for Rett syndrome research. If you have national resources you would like to share with us, please email admin@rettsyndrome.org.

The Individuals with Disabilities Education Act (IDEA)

IDEA is a law enacted in 1975 ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to eligible infants, toddlers, children and youth with disabilities. Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B.


Protected Tomorrows

Rettsyndrome.org Professional Advisor: Mary Anne Ehlert, Protected Tomorrows. Protected Tomorrows, Inc. is an advocacy firm that enhances the lives of people with special needs through a comprehensive life planning process.


Center for Parent Information and Resources

There are many ways to find someone who will help be your expert at the negotiating table if needed. There are federally funded agencies, and often the best source for a particular type of Advocate is by word of mouth – ask other special needs parents in your community.


Special Needs Alliance

The Special Needs Alliance is a national, non-profit organization committed to helping individuals with disabilities, their families and the professionals who serve them. Many of our member attorneys have family members with special needs; all of them work regularly with public benefits, guardianships/conservatorships, planning for disabilities and special education issues.


Special Needs Answers

The Academy of Special Needs Planners consists of special needs planning professionals such as attorneys, financial planners and trust officers that assists them in providing the highest quality service and advice to persons with special needs and to their families.


eParent.com

eParent.com provides practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs as well as to the physicians, allied healthcare professionals and educated professionals who are involved in their care and development.


The Arc Across a Lifetime

The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

The advancement of scientific discoveries towards treatments and a cure for Rett syndrome depend on the ability of researchers to study how mutations in the MECP2 gene affect growth and development. You can help by donating a sample of your child’s blood or tissue if they are having a routine blood draw or undergoing surgery. Coriell Cell Repository catalogs these samples and makes them available to researchers worldwide.

The passing of a loved one, especially a loved one who has lived with the diagnosis of Rett syndrome, can be very difficult. You may find solace knowing that in death she can give the gift of hope to finding treatments and acute for those living with Rett syndrome. If you are interested in learning more about organ donation, listen to the Harvard Brain Tissue Resource Center.

For any questions related to tissue or organ donations, contact Paige Nues at pnues@rettsyndrome.org.

Magic Wheelchair

Magic Wheelchair is a nonprofit organization that makes epic costumes for children in wheelchairs. Their vision is to put a smile on the face of every child in a wheelchair by transforming their wheelchairs and creating custom costumes for them at no expense to their families.


Disability Resources for College Students guide

LearnHowToBecome.org is a comprehensive career resource with a mission to help students and aspiring professionals understand what it takes to land their perfect career. This resource guide for students with disabilities contains information for students who are affected by a variety of disabilities.


Retail Savings Guide for People with Disabilities

This guide provides a detailed walkthrough of discounts and special offers for individuals with disabilities.


Kids Wish Network

Kids Wish Network grants wishes for children who are between the ages of 3 and 18 and have a life-threatening illness. Anyone can refer a child, including a family member, friend, nurse, doctor, or social worker. In addition, the organization’s “Hero of the Month” program was developed to honor children also between the ages of 3 and 18 who have overcome life-altering circumstances and have stayed in or been treated at one of our Hero pediatric care facilities.


The Dream Factory

The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.


Make a Wish America

Make-A-Wish® grants the wishes of children diagnosed with a critical illness.


Autism on the Seas

Autism on the Seas has collaborated with Royal Caribbean International since 2007 developing cruise vacation services to accommodate adults and families living with children with Special Needs, including all Cognitive, Intellectual and Developmental Disabilities. These services quickly expanded to other cruise lines.

Funding Sources

In addition to private insurance, Medicaid, and Supplemental Security Insurance (SSI), look for community resources and philanthropy groups such Rotary International, Lion’s Club, Kiwani’s and Make-A-Wish to help fund conferences, medical appointments, therapies, equipment, transportation, housing and modifications.