I am going to share some awesome thins I saw during the AAC conference.

These initiatives are focused around the topic of Ataxia.

ASPER BIOGENE

Asper Biogene is a genetic testing company focused on diagnostics of hereditary diseases. Our comprehensive testing options vary from single gene analysis to whole genome sequencing.

Website: https://www.asperbio.com/

FB: https://www.facebook.com/Asperbio/

ATAXIA: THE DOCUMENTARY

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.

Website: https://ataxiadocumentary.com/

BIOHAVEN PHARMACEUTICALS

Biohaven is a biopharmaceutical company focused on the development and commercialization of innovative best-in-class therapies to improve the lives of patients with debilitating neurological and neuropsychiatric diseases.

Website: https://www.biohavenpharma.com/

FB: https://www.facebook.com/BiohavenPharmaceuticals/

CoRDS – SANFORD RESEARCH

Based at Sanford Research, a nonprofit research institution, CoRDS is a centralized international patient registry for all rare diseases.

Website: https://research.sanfordhealth.org/rare-disease-registry

FB: https://www.facebook.com/SanfordCoRDS

DID YOU KNOW PODCAST?

A curious, knowledgeable wife to someone living with two rare diseases – Ataxia and Mitochondrial Disease. Since 2005, her mission has been to share reputable Ataxia information in short, simple, digestible servings.

Website: https://ataxia.simplecast.com/episodes

FB: https://www.facebook.com/ataxiadidyouknow/

EXICURE

Exicure, Inc. is a clinical stage biotechnology company developing a new class of immunomodulatory and gene regulating drugs against validated targets.

Website: https://www.exicuretx.com/

THE FIGHT ATAXIA PROJECT

Do you, anyone in your family, or any of your friends or aquaintances suffer from ATAXIA?

If so, we would like for you to join the fight!

Website: http://fightataxia.org/

FB: https://www.facebook.com/The-Fight-Ataxia-Project-199570541976

GENEDX

GeneDx, Inc., is an industry leader in genomics and genetic testing. For 20+ years, GeneDx has been at the forefront of genetic innovation, pioneering new technologies and gene discovery, enabling great diagnostic accuracy for patients and families.

Website: https://www.genedx.com/

FB: https://www.facebook.com/GeneDxLab/

INSTRUMENTAL DATA EXCHANGE FOR ATAXIA (IDEA) STUDY

This research study is testing body-worn sensors to measure movement during simple tests of coordination, in order to evaluate the progression and severity of ataxia.

MASSMUTUAL

SpecialCare is a program developed by MassMutual that provides access to information and resources to families with dependents, of any age, who have a disability. Our mission is to help educate about the importance and steps in creating a life care plan to help provide a secure financial future for loved ones with special needs.

Website: https://www.massmutual.com/

FB: https://www.facebook.com/massmutual

MOBIUS MOBILITY

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®.

Website: https://mobiusmobility.com/

FB: https://www.facebook.com/iBOT-by-Mobius-Mobility-100409808076491/

PTC THERAPEUTICS

PTC 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.

Website: https://www.ptcbio.com/

FB: https://www.facebook.com/PTCTherapeutics

UC BERKELEY, COGNITION AND ACTION LAB

Research projects cover diverse areas of behavior and cognition, including visual, auditory, and time perception; language and speech; and motor coordination.

Website: http://ivrylab.berkeley.edu/

UNIQURE

uniQure is delivering on the promise of gene therapy – developing single treatments with potentially transformative results.

Website: http://www.uniqure.com/

VARIANTYX

At Variantyx, we specialize in high complexity genetic testing for pediatric and adult neurological disorders as well as rare, undiagnosed diseases

Website: https://www.variantyx.com/

FB: https://www.facebook.com/Variantyx

VICO THERAPEUTICS

Vico Therapeutics is a Leiden, the Netherlands, based biotech company focusing on the development of RNA modulating therapies for rare severe neurological disorders. Vico’s antisense oligonucleotide platform (AON) is focusing on different forms of Spinocerebellar Ataxia (SCA) and Huntington Disease (HD). The company is expecting to enroll first patients in a SCA and a HD trial durign the course of 2022.

Website: https://vicotx.com/

WILDERNESS INQUIRY

At Wilderness Inquiry we believe everyone belongs in the outdoors. We embody this by connecting individuals of all ages, backgrounds, and abilities to each other and the natural world through shared adventures and experiences.

Website: https://www.wildernessinquiry.org/

FB: https://www.facebook.com/WildernessInquiry/