Thank you for joining us at the 2022 Annual Ataxia Conference! This gathering provides a unique opportunity to discover services, products, and companies that serve the Ataxia community. Click the logo above to learn more about that exhibitor, or scroll through them all below. Direct contact information is provided for each exhibitor.
A special thanks to our top sponsors!
That’s why the word for 4 down on the 2022 AAC Crossword Puzzle is: SPONSOR
A documentary work-in-progress that follows researchers on a quest to develop therapeutics for Ataxia, capturing the day-to-day experiences – setbacks, realities, and triumphs – of individuals coping with the disease.
At Biogen, our mission is clear: we are pioneers in neuroscience. Biogen discovers, develops and delivers worldwide innovative therapies for people living with serious neurological and neurodegenerative diseases as well as related therapeutic adjacencies.
Biogen is conducting a first in human clinical research study for Spinocerebellar Ataxia Type 3 (SCA3) that may be of interest to you. The clinical study, named MERA, will evaluate the safety and tolerability of different doses of an investigational drug as compared to placebo (a substance that looks like the study drug, but has no active drug) in people with SCA3 who are aged 18 to 70, have symptomatic ataxia, and are able to walk 8 meters (~24 feet) unaided. Other criteria apply. If you would like more information about the study or eligibility for participation, please reach out to learn more.
Biohaven is a clinical-stage biopharmaceutical company with a portfolio of innovative, late-stage product candidates targeting neurological diseases, including rare disorders such as amyotrophic lateral sclerosis (ALS). Our product candidates are small molecules based on three distinct mechanistic platforms—glutamate modulators, myeloperoxidaseor (MPO) inhibitors, and calcitonin gene-related peptide (CGRP) receptor antagonists—which we believe have the potential to significantly alter existing treatment approaches across a diverse set of neurologic indications with high unmet need in both large markets and orphan indications.
The CACNA1A Foundation supports individuals diagnosed with ataxia due to a CACNA1A genetic variant. These include: Episodic ataxia type 2 (EA2), spinocerebellar ataxia type 6 (SCA6), congenital ataxia & chronic progressive cerebellar ataxia. CACNA1A is a gene that plays a vital role in the communication between neurons in the brain and codes for the alpha-1A subunit of the P/Q-type voltage-gated calcium channel called Cav2.1. We fund research and raise awareness to accelerate the understanding, diagnosis and treatment of CACNA1A-related diseases.
The Cognition and Action Lab at the University of California, Berkeley, is recruiting participants with ataxia for an on-line research study. The lab, directed by Professor Rich Ivry, seeks to understand how ataxia impacts motor performance and aspects of cognition such as attention, memory, and language.
The research involves behavioral experiments that are run on your home computer. In the motor experiments, we test how well you can control the computer cursor using your mouse or your finger on your trackpad. In the cognitive experiments, we test your short- and long-term memory, as well as your problem-solving skills. The experiments are not physically demanding and last between 30 minutes and an hour. You can choose to participate in just one experiment or sign up for additional experiments. This program is supported by the National Institute of Health. You receive payment of $25/hour for your participation.
This research is NOT a clinical trial and will not impact your medical treatment. Rather, we ask more basic science questions that try to understand how the cerebellum works with the rest of the brain to produce coordinated movement and thought. We do expect that this work will, in the long run, prove beneficial to physicians as they develop novel interventions to assist individuals with ataxia.
For more information on the studies, please click here: tinyurl.com/Ataxia-Study-Info
Day Undefined is a new online marketplace taking a fresh approach to adaptive products. We review all types of everyday household products and home technologies that might be helpful for individuals with physical disabilities based on real insights and experiences from the disability community. Co-founders Liam Dougherty and Kate Leader are both closely connected to the Ataxia community. Liam has Friedreich’s ataxia and uses a wheelchair and many other adaptive products. He has personally felt the indignity, discomfort, and confusion with the process of buying the things that he hopes will make his life easier. Kate’s sister, Jen, has spinocerebellar ataxia and has found that some of the best products to meet her needs are “mainstream” ones that can often get overlooked. Day Undefined wants to make sure that more people with disabilities get connected to products that can benefit their daily lives. We are just getting started, so be sure to visit our website and subscribe to our newsletter for updates as we grow.
Subscribe to our newsletter: https://dayundefined.com/ (on our homepage)
Get Involved: https://dayundefined.com/pages/get-involved
My name is Dana Mauro. My husband John was diagnosed with Ataxia in 2007. We had never heard of Ataxia. Our family, friends and doctors had never heard of Ataxia. A few years ago, I decide I wanted to create awareness about ataxia. I believed that if more people knew what it was, fundraising efforts would be stronger and more funds could be used for research studies to find a cure.
I knew based on my own experience, that information was best remembered when broken into small chunks over time. So the ‘Did You Know’ video series was born. I released the series in September as my contribution to the International Ataxia Awareness Day campaign (September 25th). My goal was to give 1 fact a day about ataxia over a 25 day period. My hope was that anyone who watched the video series would learn just 1 thing about Ataxia. What actually happened was beyond my expectations. People shared the ‘Did You Know’ videos as a way to explain Ataxia to their family and friends.
I release a new ‘Did You Know’ series every September with different topics all about Ataxia. Imagine that! I hope you enjoy the videos.
To view our video playlist, click here.
Simple Podcast: ataxia.simplecast.com/
FAAST is the state of Florida’s assistive technology program. Assistive technology activities provided by FAAST include device loans, device demonstrations, device reutilization, device trainings, information and assistance, and a statewide financing program. FAAST serves Floridians who have disabilities and their family members, service providers, educators, therapists, employers, health and rehabilitation professionals, assistive technology vendors, procurement officials, and all other interested parties throughout the state of Florida.
FAAST assists those in the State of Florida. To find the assistive technology program in your state please visit https://at3center.net/state-at-programs/
Mobius Mobility manufactures the next generation iBOT® Personal Mobility Device (the “iBOT® PMD”). With advanced electronics, sensors, battery technology, and software, the world opens up to you in an iBOT®. Traverse sand, snow, mud, curbs, and inclines with terrain following 4-Wheel Mode. Family day at the beach or hiking trail with friends? You’re in. No curb cut? No problem. Move and interact with others at standing height in Balance Mode. Connect with people at eye level and reach that upper shelf. Use Stair Mode to climb up and down stairs, indoors or out. Climb independently or with the help of a trained assistant, depending on your ability. Use remote mode to load your iBOT® PMD into a van or SUV with fewer or even no modifications.
And enjoy the benefits and simplicity of a conventional power wheelchair using Standard Mode for indoor tasks and ADA compliant environments. Reach. Climb. Go. You can do all these things and more in the iBOT® PMD.
Lacerta Therapeutics, Inc. is focused on exploiting our proprietary capsid technology and scalable manufacturing platform to advance AAV-based therapies via three primary approaches: gene replacement, gene modulation and novel vectorization of antibodies.
Hi all…many of you are newly or recently diagnosed. I was diagnosed some 27 years ago. You will find that REAL info is scarce, and much of what you find is nonsense hogwash. ‘The Ataxia Boot Camp’….no need to reinvent the wheel. Learn from my experience in understandable language because you WILL need to understand and deal with what is unbelievable to most. This is a compilation of many things I picked up over the years. Attending 6 NAF conferences, leading the Chicago Ataxia Support Group, Events, Fundraisers, etc., means I have been around the block a few times, and have met, spoken to, and interacted with literally HUNDREDS of Ataxia patients of all kinds, races, and ages.
You can also get some of my Ataxia-wearness shirts which I print myself, and don’t farm anything out to a large company with no vested interest (I had a t-shirt printing business) and have been making these available for almost 15 years. Look around and explore. Hit the ‘BIO’ button. I had to learn the hard way, and can make your journey a little more manageable….
SpecialCare is a program developed by Massachusetts Mutual Life Insurance Company (MassMutual) since 2004 that provides access to information and resources to families with dependents who have a disability. Our mission is to help educate families and caregivers about the importance and steps in creating a life care plan to help provide a secure financial future.
Check out the session we presented at the 2021 Annual Ataxia Conference: 10 Basic Financial Steps For Special Needs Caregivers.
1295 State Street
Springfield, MA 01111
PTC Therapeutics is a science-driven, global biopharmaceutical company focused on the discovery, development, and commercialization of clinically differentiated medicines that provide benefits to patients with rare disorders. PTC’s mission is to provide access to best-in-class treatments for patients who have little to no treatment options and is focused on the development of new treatments for multiple therapeutic areas.
Global Patient Engagement Liaison, Clinical
Our mission is to educate, empower and inspire individuals to live their best lives!
Sacred Mountain Yoga was created with the intent of making yoga practices accessible and available for people with limited mobility, injuries and working through various health issues.
We provide simple and accessible yoga practices to improve health, reduce suffering and empower individuals to improve the quality of their lives. Classes are taught with appropriate modifications and vary in level and intensity based on the
participants’ needs .
SPECIAL OFFER FOR YOU!
Members of the Ataxia community are invited to download a Chair Yoga Program for FREE!
Use the code: NAF2021
Silverts Adaptive Clothing and Footwear is the largest supplier in North America of special needs clothing. Silverts story began in 1930 at a small department store. In 1981, we began to specialize in easy-to-wear fashion. Today, we are proud to say that we are the leader and innovator in adaptive wear, an achievement we never take for granted and work hard to maintain each and every day. We have grown with our customers throughout our journey, finding new ways to provide better service as their needs have changed. Silverts is always committed to giving our customers exceptional service, quality and value with our products for their needs.
Use promo code: NAF15 for a 15% discount.
The Solution Project is an Ataxia and disability information website.
Variantyx is a precision medicine company providing genetic testing solutions on a proprietary whole genome analysis platform at an affordable cost for patients with rare genetic disorders, such as ataxia.
The Variantyx Genomic Unity® portfolio of tests uses a whole genome sequencing (WGS) backbone and can identify all major genetic changes with industry leading sensitivity and specificity in a single test. Reflexing to more comprehensive analyses is seamless due to our WGS backbone and does not require a new sample. Using Variantyx as a first-line test can rapidly end the diagnostic search, inform management, and optimize treatment.
Our professional and compassionate teams work with your staff and patients from sample collection to insurance billing to reporting. This patient-centric process is designed to make the testing experience as smooth as possible while providing industry-leading diagnostics.
Wilderness Inquiry’s mission is to connect people of all ages, backgrounds, and abilities to each other and the natural world through shared outdoor adventures.
Through the medium of outdoor adventure travel, we inspire personal growth, enhanced awareness of the environment, and community integration. Our adventures encourage people to open themselves to new possibilities and opportunities.
Since 1978 we’ve directly served more than half a million individuals from all walks of life – diverse youth, individuals with differing abilities, and others who face barriers of use to public lands and waterways. Our programs such as Canoemobile, Gateway to Adventure, and Families Integrating Together help connect people to the outdoors and each other.
At Wilderness Inquiry, we believe that everyone belongs. We work to ensure this belief holds true in our workplace, in our community, and in the outdoors.
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