Inherited ataxia

Our Condition-Oriented Rehabilitation & Education (CORE) Package supports people living with inherited ataxias, including but not limited to Friedreich’s Ataxia (FA), Spinocerebellar Ataxia (SCA), and CANVAS.

Enable

• A comprehensive assessment delivered by clinician(s) within cann's national network experienced in inherited ataxias
  • This initial session (up to 1.5 hours) focuses on how your condition is affecting movement, fatigue, balance, coordination, and daily function
• A personalised plan to support physical management and maintain functional independence  

Uplift

• Up to two follow-up sessions, based on your goals and clinical needs
• Access to resources and tools tailored to your condition and stage of progression

Unite

• Your clinician may coordinate with public health services, local therapists, or additional allied health providers to support your care
• If available, we may also link you with local or national support networks or groups 

Exceed

• Telehealth options are available to ensure support is accessible no matter where you live
• A follow-up review may be offered annually depending on clinical need, availability of services, and funding — your clinician will discuss this with you if appropriate

You may be eligible if you have a confirmed diagnosis of an inherited ataxia (such as but not exclusive to Friedreich’s ataxia, SCA, or CANVAS) from a neurologist.

Once you're ready to get started, the process is simple:

1. Complete the online registration form.
   You’ll be asked for confirmation of your diagnosis, personal details and contact information. You’ll also review and agree to our patient terms and conditions and patient consents, which explain how we use your information and what to expect from the service. You can complete the form yourself, or a trusted nominee can do it on your behalf if needed.
2. Receive confirmation of your registration.
   You'll receive an automated email confirming we've received your registration, along with a PDF copy of your completed registration form, including your consent.
3. Eligibility review.
   Our team will review the information you've provided to assess your eligibility for cann's funded services. If we need further information, or your condition is outside those we currently support, we will contact you.
4. Acceptance and next steps.
   If your registration is accepted, we'll email you confirmation. This may include pre-assessment forms to complete and return to hello@cann.org.nz.
5. Booking your first appointment.
   Your local clinic will contact you to arrange your first appointment, usually within 10 working days of acceptance.

We aim to offer support as promptly as possible, but access to services may depend on available funding and clinical capacity.

We rely on the generosity of grant funders and donors to provide our services, and appreciate your understanding if there are any delays.

The University of Auckland Centre for Brain Research are undertaking studies for inherited ataxias, we recommend you contact the university if you are interested in finding out more about participating in these studies. 

cann Charitable Trust is proud to partner with the Neurogenetics Research Clinic (NGRC) you can find more information about our collaboration here.