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Our Commitment to Privacy

At the Alternating Hemiplegia of Childhood Foundation (“the Foundation”) we are committed to ensuring that we protect the privacy of the families we serve. We will do our best to ensure that any private information you provide via mail, email, or telephone, or that we collect as a result of your visit to our website is treated according to this policy.

The Information We Collect About You

The Foundation is the sole owner of and the only organization that uses the information collected in the manner described above. We will not share, rent or sell this information, with the exception of sharing select de-identified information with researchers or medical professionals, or for a cause that benefits the fulfillment of our mission.

The Foundation maintains a USA Directory of AHC Patients. Information gathered through direct contact, email or our website is included. We will never share, rent or sell this information with the exception of sharing select de-identified information with researchers or medical professionals, or for a cause that benefits the fulfillment of our mission.

Collection of Financial and Personal Information through the website 

The Foundation does provide you with opportunities to register for our newsletter and Foundation updates, make contributions, purchase products or register for upcoming events through our website. However, all of the information, including financial, credit card and other personal information, associated with these activities is processed and stored on remote sites belonging to third parties selected for their ability to securely process your payments and personal registration information and who have the same commitment to protecting your information and never sharing it with other persons and entities.

Third party personal information you provide for memorial or honor donations will be used for acknowledgement purposes only. Identifiable information you provide for merchandise shipping will not be shared.

Cookie Usage

In order to provide you with an optimum experience, our website makes use of “cookies.” Cookies are essentially files that help us identify your computer and respond to it. You may disable cookies on your own computer, but you will not be able to have full access to the website unless cookies are enabled.

How We Use Information from Cookies

The following describes the automatically collected information by cookies:

  • Your browser
  • The time and date of your visit
  • The web pages or services you accessed

This information is used for administrative and technical purposes. For instance, we may use it to count the number of visitors to our site, and determine the most popular pages. We may also use it to review types of technology you are using, determine which link brought you to our site, assess how our advertisements on other sites are working and to help with system maintenance.

Email Contact

We use information contained in your emails directed to any email address found on the website only for the purpose of responding to those emails. If we ask you to fill out any forms or surveys, we will use the information we receive only for the specific purposes indicated in those forms or surveys.

We maintain an email mailing list of the families and friends of the Foundation. The list is used by authorized Board members to disseminate pertinent information, update profiles and compile demographics. The information received through these emails is not shared with anyone without your permission.

Any email directed to an email address containing medical information will be forwarded to the persons authorized to receive it.  It is recommended that no one send emails containing private or protected medical information to anyone except medical personnel authorized to receive them.

Information Received via USPS and Our Mailing List

Information we receive by mail is collected by one staff member, reviewed and forwarded when necessary to other staff members. We do not disclose the names of senders to third parties.

Children’s Policy

We do not knowingly collect information from children under the age of 18. We disregard any information that we discover has been provided by children. We do not include any information on our website site that we consider unsuitable for children, but we cannot guarantee the content of any linked or research sites we may list.

Security Issues 


We make every effort to protect the integrity of your information. We limit the right of access to your information to employees that need to use the information to respond to or process your request or transaction.

As you know, Internet users are increasingly targeted by unscrupulous persons attempting to acquire sensitive personal or financial information.  Unfortunately, no transmission of data over the Internet is guaranteed to be completely secure. It may be possible for third parties not under our control to intercept or access transmissions of data and private communications unlawfully. Although we strive to protect your personal information we cannot guarantee or warrant the security of any information you transmit to us. Any such transmission is done at your own risk.

Links to Other Useful Sites 

We provide links to websites maintained by other organizations that provide information that may be of interest to you or that relate to our cause. These links are provided as a convenience to you. We have no control over linked sites, and cannot guarantee the accuracy of any information on them, nor make any pledges concerning the hosts’ privacy policies.

Social Media

The Foundation uses social media and networking services to advance our work, including, but not limited to Facebook, Twitter, Linkedin, Instagram, YouTube  and Yahoo. We also send and receive direct messages through these sites. These messages are never shared with any outside party. Our social media sites are administered internally.

How to Contact Us 

If you have questions about our privacy policy, please email

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