Help groups run by families like yours
Twenty family-led and grassroots organizations founded by parents, caregivers and people with lived experience, offering emotional support, advocacy, education and community.
There is a particular kind of help that only comes from someone who has been where you are. These groups provide it, rooted in real-world understanding. We have included several Michigan organizations for families near us in Genesee County.
National family-led networks
Family Voices
A national grassroots network led by families of children with special health care needs, offering peer support, policy advocacy, toolkits and local connections.
familyvoices.orgParent to Parent USA
Connects parents with trained peer-support parents across the U.S. for emotional and practical guidance on caregiving, education and healthcare.
www.p2pusa.orgHands & Voices
A parent-run nonprofit offering unbiased support for families of deaf or hard-of-hearing children, with nationwide chapters.
www.handsandvoices.orgDecoding Dyslexia
A parent-founded volunteer movement advocating for improved dyslexia instruction and education policy across the U.S. and Canada.
www.decodingdyslexia.netParent Centers (PTIs and CPRCs)
A nationwide network of nearly 100 grassroots parent training and information centers serving families in every U.S. state and territory.
www.parentcenterhub.orgFederation for Children with Special Needs
A Massachusetts-based grassroots organization providing parent-to-parent support, educational workshops and advocacy training.
fcsn.orgFamily Hope Center
A grassroots family resource center offering local support, education and training for parents of children with disabilities.
familyhopecenter.org1in6 Support
Free weekly support groups and online forums for families of children with disabilities in Michigan and nationwide.
www.1in6support.org
Michigan groups
Michigan Alliance for Families
A grassroots partnership supporting parents of children with disabilities through statewide advocacy, training and one-to-one family support.
www.michiganallianceforfamilies.orgMichigan Family Voices
A collaborative network of Michigan parents advocating for improved healthcare and special education services statewide.
familyvoices.orgAdvocates for Mental Health of Michigan Youth
A parent-led coalition advocating for children and youth with complex mental health needs through education and legislative reform.
f2fmichigan.org
Local chapters of national organizations
The Arc local chapters
Local chapters, which began as grassroots family movements, provide advocacy training, peer support and community services nationwide.
thearc.orgEasterseals local affiliates
Community-based affiliates offering therapy services, inclusive programs, camps and parent resources.
www.easterseals.comUnited Cerebral Palsy local chapters
Family-led chapters providing peer support, assistive technology and community services for children with cerebral palsy and related disabilities.
ucp.orgAutism Society of America local affiliates
Local support groups, educational events, inclusive opportunities and advocacy for autistic individuals and families.
www.autismsociety.orgAutistic Self Advocacy Network
Supports autistic children and youth through leadership programs, advocacy and policy reform.
autisticadvocacy.orgOrganization for Autism Research
Founded by parents, OAR funds applied autism research and provides practical resources for families.
researchautism.org
International groups
Kupenda for the Children
A grassroots nonprofit supporting children with disabilities through inclusion, advocacy, prosthetics and community education, founded in Kenya.
www.kupenda.orgThe Winford Centre for Children and Women
A Lagos-based organization empowering families of children with autism, ADHD and other disabilities through advocacy and education.
www.thewinfordcentre.orgScope UK community forums
Peer-run forums offering emotional support, advice and shared experience for parents of disabled children in the UK.
www.scope.org.uk
The Alexander Foundation has found these sites helpful. We list them as a starting point, not an endorsement, and we encourage every family to decide for themselves what is useful. Nothing here is medical advice.
Two ways to take the next step
You are not alone in this.
If your child has Cloverleaf Syndrome or another craniofacial condition and the bills are piling up, tell us what is happening. We help where we can, and we will point you to people who can help with the rest.
Every dollar reaches a family.
Nobody at the foundation is paid. Apart from minimal supplies and tax filing, every gift goes to families, hospitals, schools and books that change how children treat each other.