RESOURCES FOR FAMILIES AND FRIENDS

RECOMMENDED READING

For the newly diagnosed:

• Welcome to Holland, by Emily Perl Kingsley
• On Radical Acceptance (& Not Fixing Your Kid) by Heather Lanier
• Welcome to the Club, from A Diary of a Mom blog
• It’s Not About the Exceptions: All Stories Matter, from Ellen Stumbo

For our extended families:

• How to Help a Rare Disease Family, Graphic by Effie Parks of Once Upon a Gene podcast
• 9 Ways You Can Help a Special Needs Parent, by M. Lin
• 7 Things You Don’t Know About a Special Needs Parent, by M. Lin

Books for Adults

• Raising a Rare Girl: A Memoir by Heather Lanier
• Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Ladau
• The Reason I Jump: The Inner Voice of a 13-Year-Old Boy with Autism by Naoki Higashida
• Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children by Gina Gallagher and Patricia Konjoian
  – A humorous, but helpful book about raising children with special needs.
• Genetics for Dummies by Tara Rodden Robinson
• The Out of Sync Child by Carol Kranowitz
  – Provides a thorough understanding of Sensory Processing Disorder (SPD).
• Neuroscience, Exploring the Brain 4th Edition by Mark F. Bear, Barry W. Connors, Michael A. Paradiso
  -Undergraduate textbook on the biology of the brain and the systems that underlie behavior. Please note – this book is quite expensive, so check your local library or look for the 3rd edition which is much cheaper.

Books for Children

These books are not all necessarily about special needs. Some merely teach children that it is okay to be different or teach the importance of kindness.

• Just Because by Rebecca Elliott
• Dancing With Daddy by Anitra Rowe Schulte
• Spaghetti in a Hot Dog Bun by Maria Dismondy
• Tacky the Penguin by Helen Lester
• Horton Hears a Who by Dr. Seuss
• It’s Okay to be Different by Todd Parr
• Red:  A Crayon’s Story by Michael Hall
• Litet syskon (Young sibling) by Christina Renlund, Gothia. No English translation yet.
• Additional books that encourage kindness towards others

Articles

This article discusses two women who share a very rare genetic variation and the different ways in which the variation affects each of them.

• “The DIY Scientist, the Olympian and the Mutated Gene” by David Epstein, ProPublica, 1/16/2016

Articles that discuss Whole Exome Sequencing:

• “Fighting a One of a Kind Disease” The New Yorker, by Seth Mnookin, 7/21/2014
• “What Do You Do When You Have One of the Rarest Diseases Around” by Emily Mullin

Info on re-purposing existing drugs for rare disease: Podcast, Article

WEBSITES

Genetic/Medical Information

• Genetic and Rare Diseases Information Center – provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases.
• Unique – Understanding Chromosome Disorders – Support and information for families of children with rare disorders.  Based in the U.K.
• University of Michigan Health System – page on Genetic Syndromes, contains many useful links
• National Human Genome Research Institute – Talking Glossary of Genetic Terms
• Genetic Alliance
• Global Genes – Rare disease advocacy group
• Global Genes – Rare Toolkits – provides individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients. RARE Toolkits are being created in collaboration with key rare disease stakeholders that have developed a vast array of subject matter expertise and believe in the importance of sharing these best practices.
• Rare Disease Day – official website for Rare Disease Day, which occurs on the last day of February each year
• Clinical Trials – ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.
  * can search GRIN2B on this site to find out if there are any current clinical trials.
• Orphanet – portal for rare diseases and orphan drugs
• Seizing Life podcast – Hosted by CURE Board Member Kelly Cervantes, The Seizing Life podcast aims to inspire empathy and give people hope as we search for a cure.

For Inspiration

• The Mighty – offers inspirational stories of people and families living with rare diseases and special needs
• Short documentary about Eunice Kennedy Shriver, who founded the Special Olympics
• Special Books by Special Kids – Created by Mr. Chris, a Special Education teacher in the United States, who creates videos of the students in his classroom to help teach the world about neurodiversity.
• Ultimate List of Grants and Resources for Families of Kids with Special Needs

Additional Resources

• Make-A-Wish America – granting wishes for kids with life-threatening or life-limiting medical conditions.
• The Special Olympics
• Special Education and Disability Acronyms/Abbreviations – Quick Reference Guide

RESOURCES FOR INTERNATIONAL FAMILIES

International Books

• ‘Hun goed recht’  Passend onderwijs voor leerlingen met zeer ernstige verstandelijke en meervoudige beperkingen, by Cor van Hoof en John van Dijen. Emiliusschool Uitg. Garant  isbn 978-90-441-2461-3
• Kijk, zo speel ik! Spelen met uw visueel gehandicapt kind, by Bartiméus isbn 90-71534-38-3
• Het Rett handboek by Kathy Hunter isbn  90-74943-75-6
• Ervaar het maar met…. knutselen by Thyra Koeleman isbn  90-809449-1-2

International Websites

• Kinderneurologie – Dutch pediatric neurology website, includes a page on GRIN2B.
• Bosk – support for individuals living with disabilities in the Netherlands.
• Epilepsy Association Netherlands – association for people living with epilepsy in the Netherlands.
• Volwassenen, Kinderen en Stofwisellingsziekten (VKS) – association for children with metabolic disorders.
• TSPlex – Swedish Sign Language app