Privacy Policy

Last updated April 2025

The National Ataxia Foundation collects information as a way to further our mission to improve the lives of persons affected by Ataxia through support, education, and research. It is the goal and intent of NAF to protect your privacy. We want you to know what information we collect, how we use it, how that information is protected, and what you should do if you would like to request or update your information. The information provided here summarizes our policy and practices.

Information We Collect

Personal information is information that we can use to identify or contact you. It may include health and other demographic information when you register for membership, events, or other services. We may collect your name, email address, phone number(s), mailing address, date of birth, and personal health information (such as type of Ataxia). Other information that might be collected includes:

• Payment processing – We or our service providers collect credit card or bank account information when you provide it at the time of donation or payment for service.
• Online services – We or our service providers may capture IP address for the device used to access our site, cookies, or other similar technologies, the type of operating system and browser you use, and information about the site that you came from.
• Public community forum – When you provide personal information in a community area or other public forum, we may collect your name or other personal information you voluntarily disclose.
• Surveys – We sometimes collect personal opinions about events, services, or programs. Participation is always voluntary.

How We Use Information We Collect

The personal information that you provide allows us to help you on a more personal level. We can better respond to requests, understand your needs, and provide appropriate information or resources. Unless you tell us otherwise, when you provide your information, we will use your information as allowed by law and NAF policies to deliver the programs you are involved with and in furthering our mission. NAF will not willingly provide, sell, trade, share, transfer or in any other way deliberately reveal any private donor information without an individual’s consent with the exception of the organization’s annual report. Individuals that do not wish to be identified in NAF’s annual report may opt-out in writing or by verbal request.

How We Protect Information Provided to Us

NAF is committed to protecting your privacy. We take several security measures to ensure that private, financial, and medical information is protected. Staff and contracted service providers are the only individuals with access to our network where personal data is stored. Our network has multiple security measures in place to protect personal information that include:

• SonicWall firewall with active content filtering, IDS/IPS, gateway anti-virus, anti-malware, and botnet filtering protecting the National Ataxia Foundation office.
• Office 365 multi-factor authentication (MFA) enabled for all users.
• Office 365 data (mail, SharePoint, etc) backed-up and encrypted in the cloud.
• Controlled access to National Ataxia Foundation’s SharePoint site.
• Cisco Umbrella DNS encryption and content filtering software deployed to all endpoints/workstations.
• SentinelOne EDR endpoint security software deployed to all endpoints/workstations with 24/7 SOC monitoring.
• Enterprise-grade Securence e-mail anti-spam platform protecting all mailboxes under the ataxia.org domain.

Personal and financial information collected for payments or donations are processed through a third-party service provider. Our service provider, GiveSmart, is PCI Level 1 Certified, which is the industry’s highest standard for security and privacy. They have many safeguards in place, both physical and technological measures, to protect data and financial information. Read the GiveSmart Privacy Policy for more information.

How to Update Your Information or Contact Us with Questions

Keeping your account information and preferences up-to-date is important to us. You may review your information, request that we exclude your information from communication activity, request that we stop using it, or update certain account information by contacting us at naf@ataxia.org or calling us at 763-553-0020.

Disclaimer Statement

The information and medical advice expressed on this website are not a substitute for conventional medical service. As new research and clinical experience broadens our knowledge, information about Ataxia, treatment, and drug therapy may change. Information on this site should not be used in place of a visit, call, consultation, or advice of your physician or other healthcare provider. The advice is intended to provide only a general basis for a person to discuss their personal medical condition with their health care provider. You should never disregard medical advice or delay in seeking it because of something you have read here. If you have a severe medical condition, see your physician of choice.