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
Family Empowerment Representative
Shannon Stoiber-Darrah, volunteer Family Empowerment Representative, email@example.com 1-913-302-7498
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.
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
St. Louis Children's Hospital
Visit St. Louis Children’s Hospital Website
1-314-454-6120 Appointments, Sara Harrison – Clinic Coordinator
The St. Louis Children’s Hospital’s Rett Spectrum Clinic is a collaboration between Washington University School of Medicine and St. Louis Children’s Hospital. Within a clinic visit, patients and their families will meet with several caregivers including neurology, therapy, and nutrition along with other specialists as needed.
State Agencies & Resources
Local Service Agencies
Aging and Disability Resource Center (ADRC)
ADRC is a trusted source of information where people of all ages, abilities and income levels – and their caregivers – can go to obtain assistance in planning for their future long-term service and support needs.
Kansas Special Health Care Needs (SHCN) Program
Visit Kansas Special Health Care Needs Program Website
The Kansas Special Health Care Needs (SHCN) Program SHCN provides specialized medical services to infants, children and youth up to age 21 who have eligible medical conditions. Services may include diagnostic evaluations, treatment services or care coordination and must be prior authorized.
Visit FamiliesTogether,Inc Website
FamiliesTogether assists Kansas parents and their children who have disabilities or special health care needs.
The Dream Factory of Greater Kansas City
Visit The Dream Factory of Greater Kansas City Website
Since 1985, the Dream Factory of Greater Kansas City has been dedicated to making dreams come true for critically or chronically ill children. As a 100 percent volunteer organization, granting dreams is their mission.
View Kansas Medicaid Waivers
View Kansas Medicaid Waivers
Kansas currently has six waivers that are open to children. All are HCBS Medicaid waivers and these programs waive parental income.
Visit TA Program Website
The TA Program serves individuals ages 0 through 21 years who are chronically ill or medically fragile and dependent upon a ventilator or medical device and who require ongoing daily care by a nurse comparable to the level of care provided in a hospital setting; or an individual who is at imminent risk of hospitalization, whose illness or disability, in the absence of home care services, would require admission to a hospital.
Children's Resource Connection
Visit Children’s Resource Connection Website
Children’s Resource Connection Contact Children’s Resource Connection for information about TA program and eligibility. Email firstname.lastname@example.org.
Home and Community Based Services Intellectual/Developmentally Disabled (I/DD) Program
Visit Home and Community Based Services Intellectual/Developmentally Disabled Program Website
The Home and Community Based Services Intellectual/Developmentally Disabled (I/DD) program serves individuals age five and older who meet the definition of intellectual disability. The “single point of entry” into the HCBS I/DD Program in Kansas is your local Community Developmental Disability Organization (CDDO). For more information, email email@example.com.
View CDDO Contacts
Physically Disabled (PD) Program
Visit Physically Disabled (PD) Program Website
The Physical Disabilities Program serves individuals age 16 to 65 years of age who meet the criteria for nursing facility placement due to their physical disability, who are determined disabled by social security standards, and who are Medicaid eligible. Contact your local ADRC to find out about the Physical Disabilities Program. You can apply through your local CCDO. For more information, email John.Barry@kdads.ks.gov.
Kansas Infant Toddler Services
Kansas Infant Toddler Services is administered by the Kansas Department of Health and Environment (KDHE). KDHE provides early intervention services for infants and toddlers with disabilities (birth through 2) and their families. Contact your local agencies for services.
View Infant Toddler Services Local Agencies
View Infant-Toddler Resources & Links
Kansas Guardianship Program (KGP)
Visit Kansas Guardianship Program Website
KGP offers information and advocacy services to assist with the guardianship process.
Transition to Adult Services
Kansas Transition to Adult Services
The transition process should begin by age 14 and information about the student’s needs during the transition process should be included in the IEP during that process. By 16, the IEP must include a coordinated set of services designed specifically to transition students from school to post-school outcomes. The IEP must include a statement of needed transition services and any external agency involvement. The Kansas definition of an IEP says that the transition IEP should be a part of the general IEP, and not a separate plan. It should be coordinated in accordance with the related services discussed in the general IEP of the student. However, it should be specific to post-secondary goals and should be geared towards preparation for the future and goals for future that are relevant to the individual’s strengths and interests.
Kansas Department of Revenue (DOR)
Visit Kansas Department of Revenue Website
The Kansas Department of Revenue (DOR) issues the placards and license plates. Your doctor’s medical certification will determine whether you get a temporary or permanent permit. You can apply for a handicap parking placard from the Kansas DOR by mail or in person. Mail or take your application to your local KS county treasurer’s office.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to firstname.lastname@example.org.
Legal Resources & Information
Disability Rights Center of Kansas (DRC)
Visit Disability Rights Center of Kansas Website
The Disability Rights Center of Kansas (DRC) is a public interest legal advocacy agency empowered by federal law to advocate for the civil and legal rights of Kansans with disabilities.
Kansas Rettsyndrome.org Families Facebook Page
Rocky Mountain Rett Association
Visit Rocky Mountain Rett Association Website
The Rocky Mountain Rett Association (RMRA) was founded for three reasons; to fund research for the development of treatments & cures for Rett Syndrome and related MeCP2 disorders, to support families suffering from Rett, and to raise awareness for Rett Syndrome.
Rocky Mountain Rett Association
PO Box 1294
Morrison, Colorado 80465