{"id":11936,"date":"2020-02-03T20:27:06","date_gmt":"2020-02-03T20:27:06","guid":{"rendered":"https:\/\/www.ataxia.org\/?p=11936"},"modified":"2026-05-13T09:39:05","modified_gmt":"2026-05-13T14:39:05","slug":"ataxia-community-links","status":"publish","type":"post","link":"https:\/\/www.ataxia.org\/ataxia-community-links\/","title":{"rendered":"Ataxia Community Links"},"content":{"rendered":"\t\t
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It can be hard to connect with other people who have Ataxia. NAF has a number of support groups<\/a> around the country to help you learn and meet others. There are also lots of great online resources from other members of the Ataxia community. Finding them can be difficult if you don’t know where to look. To make it a bit easier, we started this list!\u00a0<\/p>

These are peer-run groups, blogs, websites, and podcasts from fellow members of the Ataxia community. Do have a good link to share? Send it our way! Use the submission form below to add an Ataxia community resource to this list.<\/p>

Please note, these groups and sites are not affiliated with NAF. Their content is not reviewed or monitored by NAF staff.\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Ataxia Facebook Groups<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Parents of Kids with Ataxia<\/b>
This group is for parents who have a child who has Ataxia. This is our spot to learn from one another, vent, have fun, and discuss topics important to us!
facebook.com\/groups\/ParentsOfKidsWithAtaxia<\/a><\/p>

SCA14<\/b>
Exclusively for individuals diagnosed with SCA14 by genetic testing.
facebook.com\/groups\/2195583757438500\/<\/a><\/p>

Under 30 with Ataxia<\/b>
You must have Ataxia yourself and be ages 16-30 to join this group. Parents, spouses, and friends of people with Ataxia aren’t allowed to join the group.
facebook.com\/groups\/Under30withAtaxia\/<\/a><\/p>

Spinocerebellar Ataxia Awareness and Research Support Group
<\/strong>Our group provides support, education, awareness, and shares personal experiences with each other to learn and become aware of how SCA affects individuals.
facebook.com\/groups\/Ataxiasupportgroup<\/a>
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CANVAS (RFC1) Syndrome Support Group
<\/strong>This group is for people who have been, OR are in the process of being diagnosed with CANVAS, OR are a caregiver to someone with CANVAS (Nurse, Doctor, family member).
facebook.com\/groups\/canvassyndrome<\/a><\/p>

Ataxia Resources and Discussion Group<\/strong>
facebook.com\/groups\/1673775846150790<\/a><\/p>

Cannataxia<\/strong>
facebook.com\/groups\/2340960579452971<\/a><\/p>

Ataxia Rocks<\/strong>
facebook.com\/groups\/864677347039596<\/a><\/p>

Babel Family – Friedreich\u2019s Ataxia Group<\/strong>
facebook.com\/groups\/52801039038<\/a><\/p>

Journey Living with Friedrich\u2019s Ataxia (FA)<\/strong>
facebook.com\/groups\/49415652743<\/a><\/p>

Ataxia Friends<\/strong>
facebook.com\/groups\/210268152337135<\/a><\/p>

Ataxia International<\/strong>
facebook.com\/groups\/155098154526932<\/a><\/p>

FA\u2019ers<\/strong>
facebook.com\/groups\/IhaveFA<\/a><\/p>

Friedreich\u2019s Ataxia \u2013 my illness<\/strong>
facebook.com\/groups\/132784610070<\/a><\/p>

ataxia friends<\/strong>
facebook.com\/groups\/746918332709343<\/a><\/p>

Ataxians Helping other Ataxians<\/strong>
facebook.com\/groups\/ataxianshoa<\/a><\/p>

FA<\/strong>
facebook.com\/groups\/158427644197352<\/a><\/p>

Living with Ataxia<\/strong>
facebook.com\/groups\/140270585998249<\/a><\/p>

Ataxia y at\u00e1xicos<\/strong>
facebook.com\/groups\/133060746722115<\/a><\/p>

Ataxia & Fitness<\/strong>
facebook.com\/groups\/ataxiafitness<\/a><\/p>

Ataxia Group<\/strong>
facebook.com\/groups\/135999194491<\/a><\/p>

Sweet FA – living with Friedreich’s Ataxia<\/strong>
facebook.com\/groups\/59557476773<\/a><\/p>

Episodic Ataxia Support Group<\/strong>
facebook.com\/groups\/50016438100<\/a><\/p>

Working to Cure Ataxia<\/strong>
facebook.com\/groups\/cureataxia<\/a><\/p>

Friedreich\u2019s Ataxia<\/strong>
facebook.com\/groups\/15845915511<\/a><\/p>

aTOXia<\/strong>
facebook.com\/groups\/aTOXia<\/a><\/p>

Western Australia Support Group <\/strong>
facebook.com\/groups\/628317858763788\/<\/a><\/p>

SCA27B Facebook Group<\/strong>
facebook.com\/groups\/1637266000066894<\/a><\/p>

Central Texas Ataxia & Neurological Disorders Support Group<\/strong>
www.facebook.com\/groups\/412335849525326<\/a><\/p>

Ataxia Support<\/strong>
www.facebook.com\/groups\/215665620308931<\/a><\/p>

Caregiver Action Network Community<\/strong>
www.facebook.com\/groups\/201714486219468<\/a><\/p>

Parenting with Ataxia<\/strong>
https:\/\/www.facebook.com\/groups\/728723051259944<\/a><\/p>

SCA5<\/strong>
https:\/\/www.facebook.com\/groups\/1867614883550411<\/a><\/p>

SCA6<\/strong>
https:\/\/www.facebook.com\/groups\/843558799038021<\/a><\/p>

Ataxia Support Group Book Club
<\/strong>https:\/\/www.facebook.com\/groups\/757793397073809<\/a>
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ARSACS Around the World<\/strong>
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Community Support Groups<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Parenting Chronic Illness
<\/b>thecenterforchronicillness.org\/<\/a><\/p>

Teens Living with Chronic Illness Support Group
<\/b>thecenterforchronicillness.org\/<\/a>
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SCA27B Zoom Support Group<\/strong>
Hosted by SCA27b Ataxia Foundation; Mediated by Mary Hogan, Director
Please contact Mary at sca27b@gmail.com<\/a> for information on an upcoming meeting and the Zoom link.<\/p>

Spinocerebellar Ataxia (Turkey)
<\/strong>As the Ataxia Awareness Group (Turkey), we aim to raise awareness among individuals in Turkey who are fighting this disease, together with our expert guests. We also strive to show that we are not alone in Turkey by building connections worldwide.
https:\/\/spinoserebellarataksi.com.tr\/<\/a>
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Ataxia Podcasts<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Did You Know Podcast<\/b>
The Did You Know Podcast’s goal is to share reputable Ataxia information that is simple and easy to understand in an effort to educate the public about Ataxia\u00a0
www.facebook.com\/ataxiadidyouknow<\/a><\/p>

Two Disabled Dudes<\/b><\/p>

The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast.<\/p>

Hosts Sean and Kyle are both affected by a rare disease called Friedreich\u2019s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However both dudes have completed several long distance bike rides including \u201cThe World\u2019s Toughest Bike Race\u201d – Race Across America (RAAM). Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.<\/p>

Listen on: Apple Podcasts<\/a>,\u00a0Spotify<\/a>, iHeartRadio<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Ataxia Blogs<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Our Lives, With Ataxia Along For The Ride<\/b>
A blog that shares stories from people whose lives have been affected by one of the many forms of Ataxia.\u00a0
www.scawolfer.blogspot.com<\/a><\/p>

Wheels Don’t Matter – Step Into My Life<\/b>
Jaina Hirani was diagnosed with Friedreich\u2019s Ataxia. Her blog explores the many challenges she faced and overcame in the hopes of inspiring others that are in a similar position.\u00a0
https:\/\/jaina89.wordpress.com\/<\/a><\/p>

Ataxianka<\/strong>
Dagmara has Spinocerebellar Ataxia Type 1. On her blog she shares her thoughts and experiences.
https:\/\/ataxianka.com\/<\/a><\/p>

The Marked for Glory Podcast<\/strong>
Run by Mark Desa
Apple Podcasts – https:\/\/podcasts.apple.com\/ca\/podcast\/the-marked-4-glory-podcast-turning-disability-into-ability\/id1579085094<\/a>
Spotify – https:\/\/open.spotify.com\/show\/6Z59FD9ic0XCg4h5fxYbDn<\/a><\/p>

Clumsy Girl Travels<\/strong>
A travel blog featuring unique & unconventional experiences from around the world with a side of humor.
https:\/\/clumsygirltravels.com\/<\/a><\/p>

eSCAping Type 1<\/strong>
Living life to the fullest with Spinocerebellar Ataxia. Meg, has Spinocerebellar Ataxia \u2013 Type 1. She used to be a high school English teacher, but now she’s a stay-at-home mom who\u2019s sharing this next chapter of her life (& attempting to promote SCA awareness) through her blog.
https:\/\/escapingtype1.com\/<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Ataxia Websites<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Dentatorbral Pallidoluysian Atrophy (DRPLA)<\/strong>
Community message board for those with DRPLA.
www.rareconnect.org\/en\/community\/dentatorubral-pallidoluysian-atrophy<\/a><\/p>

The Fight Ataxia Project<\/b>
Support, information, and education for people with any type of Ataxia, their family, friends, caregivers, etc.\u00a0
www.fightataxia.org<\/a><\/p>

Kyle Bryant: Shifting Into High Gear<\/b>
Kyle Bryant was diagnosed with Friedreich’s Ataxia (FA) in 1998, when he was 17 years old. His book is about his legendary trike ride from California to the 50th Annual NAF meeting in Memphis, TN in 2007.\u00a0
www.kyleabryant.com<\/a><\/p>

Spinocerebellar Ataxia Type 14<\/strong>
Community message board for those with SCA14.
www.rareconnect.org\/en\/community\/sca14\/updates<\/a><\/p>

Spinocerebellar Ataxia Type 29 Community Message Board<\/strong>
For those with SCA29.
www.rareconnect.org\/en\/community\/spinocerebellar-ataxia-type-29<\/a><\/p>

We Are Strong: A True Story of the De Mint Family<\/strong>
Three brothers growing up and leading a normal life in Southern California, unexpectedly find themselves facing an odyssey of challenges when they are all stricken in their teens with a rare and debilitating neurological disease called “Ataxia.” Meet the De Mint family, and learn of their amazing and inspiring journey together.
wearestrongmovie.com\/<\/a><\/p>

MyGene2<\/b>
MyGene2 is a website which was created as a place for families affected by rare disease to share their health and genetic information in order to connect with other families, clinicians, and researchers. Sharing anonymous health and genetic information broadly allows for improved understanding of the genetic causes of rare diseases and the role of genes in our health. It also allows families to connect with researchers who are studying particular disorders or genes.
https:\/\/mygene2.org\/MyGene2\/<\/a><\/p>

Day Undefined<\/strong>
An online marketplace that curates home goods and technologies based on the insights and experiences of people with disabilities. We focus on finding products according to their use, style, value, and personal recommendations. We are just getting started, so our collections are growing, and we value your input! Is there a particular product, such as a water bottle, kitchen tool, phone charger, or other household item or home technology product, that you love (whether or not it’s considered adaptive) because it makes some aspect of your day easier or more enjoyable? Help us tell others about it by\u00a0filling out this recommendation form<\/a>. If you already have a product on our website, leave a review!
\u00a0www.dayundefined.com<\/a><\/p>

Michael Mantz<\/strong>
I\u2019m Mike with MichaelMantz.com, a dedicated platform created to empower those affected by Ataxia, a rare movement disorder.\u00a0 My mission is to raise awareness, offer support, and share inspirational stories that inspire positive change.\u00a0 Through our transformative storytelling, we provide a space for individuals to connect, share their experiences, and build a healthier, more fulfilling life.\u00a0 Join us on this journey to create a vibrant community that strives to make every moment count.\u00a0 Together, we\u2019re shining a brighter light on Ataxia and offering a helping hand to those in need.
www.michaelmantz.com<\/a><\/p>

SCA27b Ataxia Foundation<\/strong>
For anyone wishing to learn more about SCA27B.
www.sca27b.org<\/a><\/p>

Friedreich’s Ataxia News
<\/strong>Friedreich\u2019s Ataxia News, a Bionews brand, provides trusted information, news, and connections that help to empower Friedreich\u2019s Ataxia Disease community, fostering a space where hope thrives.
friedreichsataxianews.com\/<\/a><\/p>

Jack Bear Foundation<\/strong>
SCAR-15
A foundation committed to finding treatment and a cure for individuals living with Spinocerebellar Ataxia Recessive Type 15, a rare degenerative genetic disease.
www.jackbearfoundation.org\/<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Ataxia YouTube Channels<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Little Steps, Big Gains
<\/b>Elizabeth Foss, Occupational Therapist<\/i>
<\/span>“Little Steps, Big Gains” is about providing educational videos and 30 day programs to guide you along a journey towards greater mobility, strength and balance. Programs are geared towards individuals with neurological conditions and therefore modifications will be provided to find the just right challenge for you. <\/p>

www.youtube.com\/c\/LittleStepsBigGains\/<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Ataxia Books<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Remembering the Ride
<\/b>by Shirley Swier Jones<\/i>
<\/span>\u201cVernon was twenty-one, handsome, kind, fun-loving and Christian, and he was stealing my heart.\u201d Thus began a love story that would evolve over the next twenty-three years through the blessing of five children and the sadness of living with a tragic, hereditary disease. That disease would continue to impact our family for more than fifty years. This story is a personal one. It is a story of deep sorrow mingled with the joy that comes from family, love, commitment and faith.<\/p>

Order Paperback Book from Amazon<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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When the Worst Day of Your Life Didn’t Kill You: The Morning After
<\/b>by Michelle Pinard
<\/i><\/span>Running has always given me peace. It has been my sidekick, my friend, and my release. I have had 43 years of wind in my hair. It\u2019s how I breathe. When The Worst Day Of Your Life Didn\u2019t Kill You is for every reader who finds themselves in a moment where the thought of living another day becomes unbearable. When I was told the news my body was being taken from me, I had to find fresh reasons for living. For those of us who find ourselves facing a life that appears unbearable, let\u2019s take that journey together. There is a morning after.<\/p>

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Understanding Ataxia for dummies, smart people, and everyone in between
<\/b>by Jonas Cepkauskas
<\/i><\/span>OK, first things first. Most will NEVER fully understand ataxia, but knowing how and why it affects YOU will prove invaluable. It probably took several years before the problem was finally figured out, and like parenting, it never gets easier\u2026<\/p>

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As Life Went On…
<\/b>by Pinky Patel
<\/i><\/span>My passion for writing stems from the fact that I was raised in a culture where looks are more important than feelings. Having a progressive disorder requiring me to stay at home in my adult years, I tried to change what was ingrained into me the best I could and raise awareness about that deceiving disability. Being disabled, I wasn’t supposed to study beyond high school for one thing. I learned to string words together in high school, and that’s all I needed to know I was told. However, writing has turned out to be more than therapeutic for me. I hope you enjoy this collection of essays and articles recording my life.<\/p>

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My Unexpected Life: Finding Balance Beyond My Diagnosis
<\/b>by Jennifer Gasner
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Receiving a diagnosis of Friedreich\u2019s ataxia, a rare genetic neuromuscular disease, means she must prepare herself for a life of loss. In her captivating memoir, Jennifer invites you into her world where she must learn to view her changing body with compassion and choose gratitude over anger as she finds strength and acceptance in a whole new way of moving through life.<\/p>

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Prof. Hong Explores Friedreich’s Ataxia (The Rare Journey Series)
<\/b>by Richard Poulin III (Author), Matt Lafleur (Author), Anna Lomakina (Illustrator)
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Embark on an inspiring adventure with Prof. Hong Explores Friedreich\u2019s Ataxia (FA), a heartfelt and educational journey into the world of a rare neurological condition. Based on a true story, Prof. Hong takes you on an exploration through the eyes of Matt, a curious boy, and his supportive family. This story unravels the perplexing mystery of FA, showcasing moments of challenge, resilience, and the transformative power of a compassionate community.<\/p>

Blending captivating science lessons with heartfelt storytelling, this book introduces young readers to the realities of rare diseases, fostering empathy, curiosity, and a passion for discovery. Readers will learn about the science behind FA while gaining a deeper understanding of the importance of perseverance and connection in the face of life\u2019s uncertainties.<\/p>

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What is Ataxia?
<\/b>by Shawn Davis
<\/i><\/span><\/p>

\u201cWhat is Ataxia?\u201d is a short and simplified explanation of a degenerative brain disease known as Ataxia. It is not meant to be comprehensive but to simply show what the illness generally involves. Although Ataxia can vary in what causes the problems to the cerebellum or in types of symptoms, this is a good summary of common aspects of the condition. In addition to this disease, Ataxia is also referred to as a symptom to other conditions and although it can manifest similarly it is not what this book focuses on.<\/p>

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From Diagnosis to Destiny
<\/b>by Jacob “Ten20” Thompson
<\/i><\/span><\/p>

Your trials aren’t meant to break you; they’re meant to make you!<\/p>

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A Good Calamity
<\/b>by Jay Armstrong
<\/i><\/span><\/p>

How do you navigate a world that wasn\u2019t made for you?<\/p>

A Good Calamity: Useful Essays and Poems on Living with a Disability is a sharp, heartfelt collection that examines the complexities of life with a disability. Through witty essays and poignant poems, the award-winning author offers a raw, humorous, and thought-provoking exploration of resilience, identity, and the often invisible struggles faced in everyday life. With unflinching honesty, this collection challenges societal perceptions, providing a unique perspective on the triumphs and frustrations of living in a body that doesn’t always conform to expectations. Equal parts humor and heartache, these works shine a light on the personal and collective journey of navigating the world with a disability.<\/p>

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A Sharp Turn: A Step-by-Step Guide to Negotiating the First Year of a Serious Medical Condition
<\/b>by Julia Soriano
<\/i><\/span><\/p>

The advice and systems in this book have been designed to give you as wide a berth as possible to travel along the sharp turn you have just made. Drawing on her gift of organizing and her business experience author Julia Soriano developed systems for completing the myriad of tasks that suddenly became urgent, while remaining in control of her life. In this combination instruction\/memoir book she shares both her systems and her stories with anyone affected by a serious medical condition.<\/p>

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Finding Meaning with Charles: Caregiving with Love Through a Degenerative Disease<\/strong>
<\/b>by Janet Edmunson
<\/i><\/span><\/p>

Drawn from experiences over the five years she spent caring for and learning from her husband\u2019s degenerative disease. The book is positive, uplifting and includes affirmations for caregivers, designed to support and strengthen all those who are caring for those touched by health issues.<\/p>

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Gabe & Izzy \u2013 Standing up for America\u2019s Bullied and Still Dancing<\/strong>
<\/b>by Gabrielle Ford with Sarah Thomson<\/i><\/span><\/p>

The moving, true story of the young woman dubbed \u201cThe Voice of America\u2019s Bullied\u201d; how her bond with her dog, Izzy, changed her life; and their mission to help break the cycle of bullying. In middle school, Gabrielle \u201cGabe\u201d Ford developed a degenerative muscle disease, and was harassed by bullies as a result. Then Gabe got a dog, Izzy, who developed an uncannily similar disorder. This is her amazing story\u2014from her lowest days dealing with various challenges, to the unbelievable and immediate bond with Izzy, to her ongoing mission to put an end to bullying, one school at a time.<\/p>

www.gabeandizzy.com<\/a><\/p>

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Healing Wounded Doctor-Patient Relationships
<\/strong><\/b>by Linda Hanner and John J. Witek, MD<\/i><\/span><\/p>

This book is packed with information that anyone who ever goes to a doctor for any reason deserves to know and that every professional who wants to maximize his or her healing power must understand. The authors reveal surprising facts about what\u2019s behind doctor-patient mistrust and offer ample demonstration of how something as simple as effective dialog helps doctors and patients move toward productive relationships.<\/p>

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I\u2019m Fine, but Thanks for Asking and The View from Down Here
<\/strong><\/b>by Jude Lally<\/i><\/span><\/p>

An enlightening new full-length collection of poems about the challenges of living with Friedreich\u2019s Ataxia. From the difficulties of coping with isolation to the joys of spending time with family and friends, Jude Lally has captured a wide spectrum of emotion in these brilliant poems.\u00a0<\/p>

Order I’m Fine, but Thanks for Asking from Amazon<\/a><\/p>

Order The View from Down Here from Amazon<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Kendra\u2019s Lemonade
<\/strong><\/b>by Kendra Gottsleben<\/i><\/span><\/p>

See how Kendra discovers that her positive attitude helps her make the best of life\u2019s challenges as a child with a rare health condition called MPS. She describes those challenges as lemons and explains that life\u2019s \u201cLemons\u201d will happen, but that doesn\u2019t mean that those lemons can\u2019t be made into \u201c\u2026the best lemonade possible.\u201d<\/p>

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One Step at a Time: Living with Ataxia and Multiple System Atrophy
<\/strong><\/b>by Angela MacLauchlan<\/i><\/span><\/p>

Angela MacLauchlan\u2019s book details the path which led to the discovery of an obscure brain disorder that would change her life. This thoughtful and optimistic book describes her coping strategies and shows her continuing love of life despite having a rare and debilitating illness. Sprinkled with humor and sensible suggestions, this book would be beneficial for anyone needing strength to overcome struggles of any kind.<\/p>

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Scooter Sagas: Coping with Ataxia
<\/strong><\/b>by Tammy Lanning Schuman<\/i><\/span><\/p>

In the Scooter Sagas: Coping with Ataxia, Schuman narrates her experiences by sharing her snarky emails, private journaling, website chatting, and public blogging. In this memoir, she describes the reality of living with ataxia and the ways in which it affects every aspect of life.<\/p>

Order from Amazon<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Strong Medicine: A Roadmap for Creating or Improving Your Independent Living Program
<\/strong><\/b>by Bob Michaels<\/i><\/span><\/p>

In Strong Medicine Bob Michaels shares ideas and lessons that he has learned in his years of working in the field of independent living, in both government services and the non-profit sector. The reflections and strategies in his book are based on ideas and tools that he developed. In his own words: \u201cI will share experiences that made me laugh and one that made me cry. I will tell you stories that will fill you with pride and anger at the same time.\u201d\u00a0<\/p>

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Ten Years to Live
<\/strong>by Henry J. Schut<\/em><\/p>

The story of the Schut\u2019s family struggle with hereditary ataxia and the impact it had on this extended family. It is dedicated to the author\u2019s brother, Dr. John W. Schut, who was committed to the cause of finding a cure for ataxia, which claimed his life.<\/p>

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There\u2019s Nothing Wrong with Asking for a Little Help: and other myths
<\/strong>by Dave Lewis<\/em><\/p>

This is the memoir of Dave Lewis who was diagnosed at age 14 with Friedreich\u2019s Ataxia, a fatal progressive neuromuscular disease. For the next 25 years he challenged himself to live life to the fullest. In the memoir he reminisces about his seemingly normal early years, the origin of his condition (\u201cIt seems that in the genetic crap-shoot of life, I rolled snake eyes.\u201d) and his years of steady physical decline. Throughout the story he shares his emotional highs and lows, the challenges and the losses sprinkled liberally with his unique sense of humor. Sometimes accused of being stubborn, he said he was simply doing what was needed to \u201cmake a life in the middle of a nightmare.\u201d<\/p>

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I was Daniel Conner
<\/strong>by Errhyn Aim<\/em><\/p>

Set against the backdrop of Daniel\u2019s everyday life, the novel explores the complexities of living with Friedreich\u2019s Ataxia, a rare muscle disease that affects coordination and muscle strength. Daniel\u2019s story is not just about his battle with illness, but also about his relationship with his family, friends, and the world around him.\u00a0<\/p>

Order online<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Submit a Community Group, Book, or Website<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Do you have another resource to share? Let us know about it! Please email your request with the url and a few sentences to describe your site to\u00a0naf@ataxia.org<\/a>.\u00a0<\/p>

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Read Our Blog Posts<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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\n\t\tBen Williamson\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t
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\n\t\tMaitreyi Viswanathan\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t
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\n\t\tAmplifying the Voice of Ataxians: Feedback from members of the NAF community on Ataxia Symptoms\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t
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\n\t\tAtaxia Med News – February 2026\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t
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\n\t\tAdvocating for Accessibility in St. Louis\t\t<\/h3>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t<\/article>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

It can be hard to connect with other people who have Ataxia. NAF has a number of support groups around the country to help you learn and meet others. There Read More…<\/a><\/p>\n","protected":false},"author":4,"featured_media":12515,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[517,618],"tags":[],"class_list":["post-11936","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","category-support-groups"],"yoast_head":"\nAtaxia Community Links - National Ataxia Foundation<\/title>\n<meta name=\"description\" content=\"Check out some great online resources from other members of the Ataxia community. Blogs, podcasts, Facebook groups - find them here!\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.ataxia.org\/ataxia-community-links\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ataxia Community Links\" \/>\n<meta property=\"og:description\" content=\"Check out some great online resources from other members of the Ataxia community. Blogs, podcasts, Facebook groups - find them here!\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.ataxia.org\/ataxia-community-links\/\" \/>\n<meta property=\"og:site_name\" content=\"National Ataxia Foundation\" \/>\n<meta property=\"article:published_time\" content=\"2020-02-03T20:27:06+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-05-13T14:39:05+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.ataxia.org\/wp-content\/uploads\/2020\/01\/shutterstock_128810011-scaled.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"2560\" \/>\n\t<meta property=\"og:image:height\" content=\"1700\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Stephanie Lucas\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Stephanie Lucas\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"16 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.ataxia.org\\\/ataxia-community-links\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.ataxia.org\\\/ataxia-community-links\\\/\"},\"author\":{\"name\":\"Stephanie Lucas\",\"@id\":\"https:\\\/\\\/www.ataxia.org\\\/#\\\/schema\\\/person\\\/3d2a5fcede7fa9f697ed86fd79c07b27\"},\"headline\":\"Ataxia Community Links\",\"datePublished\":\"2020-02-03T20:27:06+00:00\",\"dateModified\":\"2026-05-13T14:39:05+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.ataxia.org\\\/ataxia-community-links\\\/\"},\"wordCount\":3555,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\\\/\\\/www.ataxia.org\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/www.ataxia.org\\\/ataxia-community-links\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.ataxia.org\\\/wp-content\\\/uploads\\\/2020\\\/01\\\/shutterstock_128810011-scaled.jpg\",\"articleSection\":[\"Blog\",\"Support Groups\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/www.ataxia.org\\\/ataxia-community-links\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.ataxia.org\\\/ataxia-community-links\\\/\",\"url\":\"https:\\\/\\\/www.ataxia.org\\\/ataxia-community-links\\\/\",\"name\":\"Ataxia Community Links - National Ataxia Foundation\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.ataxia.org\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/www.ataxia.org\\\/ataxia-community-links\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/www.ataxia.org\\\/ataxia-community-links\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.ataxia.org\\\/wp-content\\\/uploads\\\/2020\\\/01\\\/shutterstock_128810011-scaled.jpg\",\"datePublished\":\"2020-02-03T20:27:06+00:00\",\"dateModified\":\"2026-05-13T14:39:05+00:00\",\"description\":\"Check out some great online resources from other members of the Ataxia community. 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