Illinois

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

Family Empowerment Representative

Shelby Sawyer, volunteer Family Empowerment Representative, Frankfort   shelby.swann@yahoo.com 1-815-823-3760

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

Rush University Medical Center
Visit Rush University Medical Center Website
1-312-942-0079
Dr Peter Heydemann is the pediatric neurologist in the Rett Syndrome Clinic where a team of child psychiatrists, psychologists and behavioral pediatricians work with the pediatric neurologist to care for your child.  For NHS study information, contact Susan Rohde at susan_rohde@rush.edu.

Travel Assistance for NHS Sites – 1-781-333-1593

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

Nearby hotels include Chicago Marriott at Medical District/UIC & JW Marriott Chicago  .

Biobanking of Rett Syndrome and Related Disorders

Visit Biobanking of Rett Syndrome and Related Disorders Website
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.

Rush University Medical Center
For study information, contact Susan Rhode  susan_rohde@rush.edu or call 1-312-942-0079.

Clinics

Rush University Medical Center

Visit Rush University Medical Center Website
1-312-942-0079
Dr. Peter Heydemann
Dr. Colleen Burhfiend
Rush University Medical Center
1725 W. Harrison St., Suite 710
Chicago, IL 60612

State Agencies & Resources

Local Service Agencies

Prioritization of Urgency Needs of Services (PUNS)

Visit the Prioritization of Urgency Needs of Services Website
1-800-843-6154
PUNS is a database of individuals with developmental disabilities who need services. Children can be put on the list on their third birthday. There are currently 34,790 people on the PUNS waiting list. It is important to have your name on this list. When there is an opening, the state picks a recipient by lottery.

The Illinois Division of Developmental Disabilities

Visit the Illinois Division of Developmental Disabilities
1-888-337-5267
The DDD provides services and support for individuals with developmental disabilities. Registering with the PUNS database is the most important step you can take to receive assistance now or within the next five years. The Local Coordination Agency is the “front door” to Illinois’ state-funded service system.

The Dream Factory of Central Illinois

Visit The Dream Factory of Central Illinois Website
The Dream Factory is the only children’s wish-granting organization that does not limit its mission to children who have life-threatening illness.  Chapters in Peoria and Quincy.

State Medicaid

Home and Community Based Services Waiver Programs (HCBS)

Visit the Home and Community Based Services Waiver Program Website
The HCBS waiver provides services that allow individuals to remain in their own home or live in a community setting. Illinois has nine HCBS waivers. Each waiver offers a different set of services.

Illinois Department of Human Services

Visit the Illinois Departments of Human Services
1-800-843-6154
DHS also has information on HCBS Waivers and Children’s Waivers.

Division of Specialized Care for Children (DSCC)

1-800-322-3722
DSCC coordinates the Home Care Program waiver for children who are technologically dependent.

Early Intervention

Illinois DHS

Visit Illinois DHS Early Intervention Website
1-800-323-4769
The DHS provides Early Intervention services for children with developmental delays, ages birth through age three.

Family Resource Center on Disabilities

Visit Family Resource Center on Disabilities Website
1-312-939-3513
This is Chicago’s Parent Training Center which helps with the IEP process.

Education

Illinois State Board of Education (ISBE)

Visit Illinois State Board of Education Website
ISBE has numerous resources regarding placement, terminology and rights regarding children who are in special education. The website also offers school district performance comparisons.

Conservatorship

Illinois Guardianship and Advocacy Commission

Visit Illinois Guardianship and Advocacy Commission Website
1-866-274-8023
This commission was created to safeguard the rights of persons with disabilities. It provides legal representation, investigates complaints of rights violations and provides state guardianship for those with disabilities.

Illinois Legal Aid

Visit Illinois Legal Aid Website
Legal Aid has information on guardianship and legal resources to assist you.

Transition to Adult Services

Illinois Department of Human Services / Department of Rehabilitation Services (DRS)

Illinois Department of Human Services / Department of Rehabilitation Services (DRS)
1-312-814-4050
DRS is the state’s lead agency for transitioning from school to adult services.

Handicap Placard

Illinois DMV

Visit the Illinois DMV Website
The DMV issues handicap placards. Applications must be filled out by a doctor or physician’s assistant. Applications and renewals can be mailed.

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

Medical Professionals

Dr. Peter Heydemann

1-312-942-4036
Dr. Heydemann is a neurologist associated with Rush Hospital in Chicago. He comes highly recommended from the Rett community in Illinois.

Steven M. Mardjetko, MD - Illinois Bone & Joint Institute

1-847-375-3000
Dr. Marjetko is an orthopedist located in Morton Grove. Plan to be there for 3 hours and try to get an early morning appointment to lessen wait times.

Scheck and Siress Orthotists

Visit the Scheck and Siress Website to view their many locations.

Dr. Adrienne Prestridge - Lurie Children's Hospital

Dr. Prestridge is a Pulmonologist who sees Rett patients in Illinois and comes highly recommended.

Dr. Michael Kipp - Wheaton Eye Clinic

Visit Dr. Kipss Website
Dr. Kipp is a Pediatric Ophthalmologist at the Wheaton Eye Clinic.

Therapy

Horsefeathers Therapeutic Riding

Visit Horsefeathers Therapeutic Riding Website
Lake Forest, IL
1-847-234-2411

Shirley Ryan AbilityLab

Visit Shirley Ryan AbilityLab Website
1-800-354-7342
The Shirley Ryan AbilityLab is one of the world’s leading hospital and research facilities in physical medicine and rehabilitation, having virtually defined the entire field during the last half of the 20th century.  They are an excellent center for speech evaluations.

Legal Resources & Information

ARC of Illinois

Visit ARC of Illinois Website
The ARC offers a wide variety of programs to help persons with developmental disabilities.

Recreation

TrailLink

Visit TrailLink Website
TrailLink lists wheelchair accessible trails in Illinois.

Additional Resources

Rett Syndrome Association of Illinois Mission (RSAI)

Visit Rett Syndrome Association of Illinois Mission Website
RSAI serves as a support system for families of individuals living with Rett Syndrome. To contact John McGovern, President of RSAI, jmcgovern@oscooil.com

Illinois Assistive Technology Program (IATP)

Visit Illinois Assistive Technology Program Website
IATP is a not-for-profit agency that promotes the availability of assistive technology services, equipment and programs. IATP serves all people with disabilities in the state of Illinois, regardless of age or income.

Illinois Rettsyndrome.org Families Facebook

Visit Illinois Rettsyndrome.org Families Facebook Page 

Helping from Heaven

Visit Helping from Heaven Website
Helping From Heaven has Lexi’s Closet, an inventory closet of medical equipment, that you can try out at no cost.

Susan Norwell with Focused Learning Solutions

Visit Susan Norwell with Focused Learning Solutions Website
Susan has a private practice focusing on nonverbal individuals. She has worked with many girls with Rett syndrome and uses a variety of AT/AAC tools to teach literacy and reading.