top of page

The Genetic ALS & FTD: End the Legacy Online and Mobile Privacy Policy

Genetic ALS & FTD: End the Legacy or “ETL”  is committed to protecting the privacy of its users. Information gathered by us is used to monitor the effectiveness of our site, personalize your Internet experience, and respond to your questions and requests. ETL respects the privacy of every individual who uses ETL-owned websites, mobile applications, and other online products and services (collectively, "Site"). This notice applies to our information collection practices for this Site. Because your privacy is important to us, we provide you with notice and choices about the collection and use of your information. To make this notice easy to find, links are provided at the bottom of our homepage.

By using our site you accept the practices described in our Privacy Policy.

Use of Cookies

We use cookies, small files that are sent to your Web browser and stored on your computer's hard drive, to improve your digital experience. The cookie is used to speed up your access to the Site and the information you wish to see, but it does not contain any personal information. The majority of Web browsers accept cookies, but the “help” menu on your browser should give you options for preventing, accepting, or receiving notice of new cookies. However, please be aware that if you block cookies, some website functionality may be lost.

Data Collection

We collect two types of information:

  1. Standard Web server traffic pattern information.

  2. Personal information. Personal information, including, but not limited to, name, address, age and telephone number.

Personal information may be needed for certain online activities:
Under no circumstances will ETL provide information to outside entities, except where required by law, and then only after providing notice to the patient and/or designee. ETL  will, upon request of a user, serve as an intermediary between users and outside entities where deemed appropriate.

If you choose to customize the Web site to your needs by becoming a registered ETL Web user, we retain the preferences you select so that you will not have to reenter the information each time you access our Web site.

If you choose to donate to our organization, we maintain a record of your contribution. 

Data Use

We limit the use of information provided to us on our Site to the following:

Internal Use

  1. If you do not make a service request, donation, purchase, or otherwise identify yourself, we will have no personally identifiable information about you. We will only use aggregate information derived, in part, from your use of our site to improve our site and our service to you.

  2. If you provide personal information, we may enter your name into our constituent database and contact you in order to: 1. Complete voluntary surveys seeking feedback for quality and service improvement purposes.

  3. Supply you with information including ETL-related news, campaigns, events and services.

  4. Request voluntary time or monetary contributions to ETL.

  5. We collect the email addresses of those who communicate with us by email. If your name is entered into the database, we may contact you (see (2) above).

External Use
Your information is privileged and confidential and will not be shared or released to any organization or business entity other than those affiliated with or working in conjunction with The ETL as follows:


  1. We occasionally hire other companies to provide limited services on our behalf. We will only provide those companies the information they need to deliver the service and prohibit them from using that information for any other purpose.

Your Options

We respect your privacy and allow you to restrict internal and external sharing of your personal information. We recognize that you may wish to limit the ways in which we contact you and we offer the following options:

  1. Do not contact me by telephone.

  2. Do not contact me by postal mail.

  3. Do not contact me by email.

  4. Do not share my contact information with other non-profit organizations.

  5. Do not contact me with fundraising requests supporting The ALS Association.

  6. Do not contact me.

  7. Delete all of my data.

Upon request, we will provide you with the information we maintain about you so that you may request corrections. Please contact us by EMAIL or in writing at:

SUBJECT: Security and Privacy Requests:
Genetic ALS & FTD: End the Legacy


To protect your privacy and security, we will take reasonable steps to verify your identity before providing information or making corrections.

Data Security

The security of your personal information is very important to ETL   and we are committed to protecting the information we collect. Only ETL staff, contracted consultants, vendors, and leaders have access to this data based upon minimum necessary access. Ongoing data security training is conducted for all staff and our information technology infrastructure has been designed for protection of donor information.

We have implemented and maintain appropriate technical and organizational security measures, policies, and procedures designed to reduce the risk of accidental destruction or loss, or unauthorized disclosure or access to such information appropriate to the nature of the information, concerned, including,

  • where appropriate, password protection

  • following strict security procedures in the storage and disclosure of your personal information to prevent unauthorized access to it.

Data is used for communication and solicitation processes. We use third party partners to collect data for ETL to process donations and for event registrations. 

External Links
Our privacy policies apply only to your use of an ETL site. The website contains links to other sites, including sites that have a special relationship with us. We do not disclose personably identifiable information to those operating linked sites and we are not responsible for their privacy practices. Links to other sites do not imply an endorsement of the materials or policies on those websites. You should read the privacy policies of each site you visit to determine what information that site may be collecting about you.

This privacy statement will be updated periodically and posted on our Site. It applies only to our on-line practices and does not encompass other areas of the organization. We reserve the right to change this policy at any time by posting revisions. By accessing or using the Site, you agree to be bound by all of the terms and conditions of the ETL Online and Mobile Application Privacy Policy as posted at the time of your access or use. If you have any questions about our policy or our compliance, you may send us an email at

bottom of page