Illinois Resources

Family Empowerment Representatives  | Treatment and Research Centers | IL 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

Shelby Swann, volunteer Family Empowerment Representative, Frankfort   shelby.swann@yahoo.com1-815-823-3760


Treatment and Research Centers


Clinical Trials

 

Please contact the trial site for current enrollment status.

Natural History Study 

 

Rush University Medical Center

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 informatin, conact Ashley Lucchese, Marriott Sales Executive Ashley.Lucchese@Marriott.com

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

 

Evaluation of the Efficacy, Safety, and Tolerability of Sarizotan in Rett Syndrome With Respiratory Symptoms

 

This study evaluates the safety, tolerability and efficacy of Sarizotan in reducing respiratory abnormalities in Rett syndrome.  Eligibility criteria include girls or boys age 13 or above.

Rush University Medical Center

1-312-942-0079

 For study information, contact Susan Rhode  susan_rohde@rush.edu or call.

 

Biobanking of Rett Syndrome and Related Disorders 

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

1-312-942-0079 

 For study information, contact Susan Rohde  Susan_rohde@rush.edu


 State Agencies - Illinois


Local Service Agencies

Prioritizaton of Urgency Needs of Services (PUNS)

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.

Division of Specialized Care for Children (DSCC) 

 1-800-322-3722

DSCC provides care coordination for children that have a DSCC eligible diagnosis. For families that are financially eligible, this support can include financial assistance with treatment and equipment. They also provide case management advocacy.

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. 


Handicap Placard

Illinois DMV

The DMV issues handicap placards. Applications must be filled out by a doctor or physician's assistant. Applications and renewals can be mailed.


State Medicaid 

Home and Community Based Services Waiver Programs (HCBS)

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

1-800-843-6154

 DHS also has information on HCBS Waivers and Children's Waivers. 

Medicaid.gov

Medicaid.gov has information on all Illinois 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

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

1-312-939-3513 

 This is Chicago's Parent Training Center which helps with the IEP process. 


Education

Illinois State Board of Education (ISBE)

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

1-866-274-8023 

This comission 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

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)

1-312-814-4050

DRS is the state's lead agency for transitioning from school to adult services. 


Parent Recommendations

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 x

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

 They have many locations in Illinois.

 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

 Dr. Kipp is a Pediatric Opthomologist at the Wheaton Eye Clinic.

 ClinicalTrials.gov 

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


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)

Horse Feather Therapeutic RidingLake Forest, IL.

1-847-234-2411

Rush University Medical Center Hippotherapy

This site has resource listings and general information.

Rehabilitation Institute of Chicago (RIC)

1-800-354-7342

The Rehabilitation Institute of Chicago (RIC) 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

ARC of Illinois

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


Recreation

TrailLink 

TrailLink lists wheelchair accessible trails in Illinois.


More Parent Recommendations

Rett Syndrome Association of Illinois Mission (RSAI)

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)

IATPis 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.

Rett Thread

This is a comprehensive and informative website specifically created for Illinois families.

Illinois IRSF Rett Syndrome Families

Chicagoland Strollathon

Helping from Heaven

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

Easter Seals Services & Programs

1-847-375-3000

Contact Beth Walkington to schedule an evaluation for eye gaze. The waiting list for an evaluation can be up to 2 months. The evaluation must take place by age 2.5.

Illinois Assistive Tech Program

This is a statewide assistive technology program that helps individuals of all ages receive AT devices and services.

Susan Norwell with Focused Learning Solutions

Susan has a private practice focusing on non verbal individuals. She has worked with many girls with Rett syndrome and uses a variety of AT/AAC tools to teach literacy and reading.