SETBP1 Resources
Educational Material
SETBP1 Virtual Family Conference Resources
- Watch past SETBP1 Family Conference Presentations
SETBP1 Educational Resources
- Read the SETBP1-HD Info Sheet
- Read the SETBP1-HD Resource Guide
- NEW! Read the SETBP1-HD Speech and Language resource
- Read the SETBP1-HD Gene Review, an international point-of-carer resource
- Read the SETBP1-HD Resource Guide by NORD (National Organization for Rare Disorders)
- View the Simons Searchlight Registry Updates for SETBP1
Parent Resources
- Read about some of the common questions asked by our SETBP1 community members.
- Parents Guide to Getting Good Care by the Child Mind Institute
- Read “Self Care: A Parent’s Guide to Taking Care of Yourself (as well as Your Child)” from the Courageous Parents Network Guides section
Speech and Language Resources
- NEW! Read the SETBP1-HD Speech and Language resource
- Watch the video speech and language challenges faced by children with SETBP1 disorder presented by Dr Angela Morgan
- Read the article by the Kaufman Center describing Nancy Kaufman’s experience with SETBP1 families, Childhood Apraxia of Speech and Other Communication Disorders
- Watch the video about Childhood Apraxia of Speech and Other Communication Disorders in SETBP1 presented by Nancy Kaufman
- Learn more about Childhood Apraxia of Speech and treatment recommendations from ASHA (American Speech-Language-Hearing Association) and Apraxia Kids
- Check out Apraxia Kids’ Speech Tablets for Apraxia program.
- Check out whether your state will provide your child with a speech disability with a communication device for free or at a low cost.
- Grant Assistance for uncovered speech therapy – Small Steps in Speech
- Grant Assistance for uncovered speech therapy and communication devices – Orange Effect Foundation
ADHD Resources
Educational Resources
- Check out the Educational Recommendations Guide for families with a child with a neurodevelopmental disorder, similar to Fragile X. This document was developed by the Fragile X Clinical & Research Consortium and is relevant for our community, as well
- Watch the video to learn more about Navigating the Special Education System – provided by the Tuberous Sclerosis Alliance
- Watch the video for Strategies for Helping Students with Executive Functioning Deficits
- Watch the video for Dealing with Challenging Behaviors
- Read “Advocating for Your Child with a Rare Disease at Their School” in the Global Genes RARE Toolkits
- Read “The ABC’S of Advocating in the Classroom!” in the Global Genes RARE Toolkits
Patient Assistance Resources
- Assistance for Uncovered Medical Expenses – United Healthcare Children’s Foundation
- Flight Assistance to see Medical Specialists – Miracle Flights
- Help with Transitioning from Pediatric Medical Care to Adult Medical Care – Got Transition
Sister Organizations
Schinzel-Giedion Syndrome Foundation – The Schinzel-Giedion Syndrome Foundation is a UK-based patient organisation that represents the international Schinzel-Giedion Syndrome (SGS) community, with a mission to create medical and scientific partnerships to facilitate awareness, research and knowledge-sharing and to provide communal support for families of children with Schinzel-Giedion Syndrome.
Chromosome 18 Registry and Research Society – This 501(c)(3) nonprofit organization helps people with chromosome 18 abnormalities overcome the obstacles they face so they may lead happy, healthy, and productive lives. Annual conferences are held in July.
Apraxia Kids – Apraxia Kids is the leading nonprofit whose mission is to strengthen the support systems in the lives of children with childhood apraxia of speech (CAS) so that each child is afforded their best opportunity to develop speech and optimal communication skills. We believe every child deserves a voice. The annual Apraxia Kids Conference is held in July.
The Dyspraxia Foundation – This foundation is a 501(c)(3) nonprofit committed to helping individuals with dyspraxia, a global motor-planning disorder.
Reading Material & Programs
- The Out of Sync Child by Carol Kranowitz
- Read the book No I Will by Richard Matthews – ‘No I Will’ is a father’s own story of his experiences raising a special child. It is a searingly honest account of his struggles and the challenges he faced. It is heartfelt and uplifting, incredibly moving and full of laugh out loud humour.
- No I Will, by Richard Matthews – A father’s own story of his experiences raising a special child. It is an honest account of his struggles and the challenges he faced.
- Welcome to Holland, by Emily Perl Kingsley
- It’s Not About the Exceptions: All Stories Matter, from Ellen Stumbo
- For our friends and extended families: 9 Ways You Can Help a Special Needs Parent, by M. Lin
- Special needs blog with worldwide contributors. Having a disability or disease doesn’t have to be isolating. That’s why The Mighty exists. View the Website
- I Run 4 Michael is a non-profit organization founded in January 2013 by Tim Boyle, who was inspired to run for more than health and weight-loss by a viral meme saying, “I run because I can. When I get tired, I remember those who can’t run, what they would give to have this simple gift I take for granted, and I run harder for them.” When Tim shared the meme, Michael, a 50-something man with Down Syndrome, replied, “You can run for me any time!” In I Run 4 Michael, athletes of all levels and kinds – runners, walkers, yogis, triathletes, etc – are paired with children and adults with physical, mental, and developmental special-needs ranging from Down Syndrome and Cerebral Palsy to Autism Spectrum disorders, to physical deformities and disorders like lost limbs and congenital organ disorders, to lesser-known disorders like AHC. View Website