It’s that time of year! With many embracing the cold and hunkering down for the next few months, there is no better time to share some of our top book picks for the winter season. If you are looking for your next read or perhaps looking to gift one this holiday season, check out our recommendations that we hope will carry you through to spring.
For a book that’s excellent for children who have a parent with a rare neuroimmune disorder, consider grabbing My Mommy Wears Wheels. As stated on Amazon, “This story is based on how transverse myelitis impacted the childhood of author Colette Lanzon and her mother Patricia Lanzon. This tale shows how Colette and her mother learn to navigate adventures following her mother contracting transverse myelitis. How will Colette and her mom learn how to have fun even though her mom now uses a wheelchair? Will they be able to cook together?” Read more about this beautiful read here.
Being Heumann is a powerful memoir by Disability Rights Activist Judith Heumann. Rated five stars, the story is described as, “One of the most influential disability rights activists in US history tells her personal story of fighting for the right to receive an education, have a job, and just be human.” We gladly share this as a must-read. Find out more and read reviews here.
We were thrilled to have released No Time For The Moon in collaboration with the CDC a few months ago. If you have a child with Acute Flaccid Myelitis (AFM), this is the perfect stocking stuffer – and it’s free! The story is about four kids with AFM who have big dreams and includes an “AFM Guide for Grown-ups,” AFM FAQs, and a fun template for your child to use to share about themselves. You can download the book as a PDF or order your free print copy of the book here.
This one is a no-brainer. Demystifying Disability made NPR’s list as one of the best books of the year. Rebekah Taussig, author of Sitting Pretty: The View from My Ordinary, Resilient, Disabled Body, described this book as “A candid, accessible cheat sheet for anyone who wants to thoughtfully join the conversation . . . Emily makes the intimidating approachable and the complicated clear.”
It wouldn’t be a recommended book list from SRNA if we didn’t include a classic from our very own president, Sanford Siegel. The Patient Experience with Transverse Myelitis: An Anthropological Perspective shares a unique perspective from Sandy as both a participant and an observer of the rare neuroimmune disorders community. As stated on Amazon, “The Patient Experience covers related issues, such as changes in family dynamics, disability identity, the ADA, accessibility and adaptive technology, the role of religion in coping with illness, service dogs, the health care system in the US, and the future of research. More than twenty contributors have written articles for the book. These are people with transverse myelitis or parents of children with TM, as well as some of the leading medical experts in the field. The Patient Experience with Transverse Myelitis chronicles a very personal journey of the people from a rare disease community.” We are proud to have this excellent read on our list.
If you’re a fan of chef Christine Ha like we are, consider picking up her cookbook Recipes from My Home Kitchen. The focus is specifically on Asian and American comfort food. In the book, readers will discover food that speaks to the best of both the Vietnamese diaspora and American classics, personable tips on how to re-create delicious professional recipes in a home kitchen, and an inspirational personal narrative bolstered by Ha’s background as a gifted writer.
There are so many incredible books written every year. We hope that these recommendations get you excited to curl up this winter and get started on your reading list for 2023. Check out more books written by others with rare neuroimmune disorders, like Up and Down, Determination, and The Best Seat In The House.