Annual Reports 2016
Annual Reports 2015
Our Commitment To Our Donors
We will not sell, share or trade our donors’ names or personal information with any other entity, nor send mailings to our donors on behalf of other organizations. This policy applies to all information received by CurePSP both online and offline, on any Platform (“Platform” includes the CurePSP website and mobile applications) as well as any electronic, written or oral communication. To the extent any donations are processed through a third-party service provider, our donors’ information will only be used for purposes necessary to process the donation.
Use and Disclosure of Your Personal Information
The Foundation will collect personal information (such as your name, address, telephone number or e-mail address) and demographic information (such as zip code or age) only if the individual provides the information to the Foundation. When the Foundation receives personal or demographic information we may use it for reasonable purposes. For example, we may use this information to contact you, via email or regular mail, to provide you with information we believe may be of interest. Such information may also be used for compiling data and analysis to understand your needs and for other programs, research and fundraising activities.
Personal Information You Provide to Us
In some cases, you may choose to provide us with personal information in order to contact us, request our communications by email, volunteer, donate or utilize one of our services. Personally identifiable information will not be sold to or shared with other organizations or third parties. Some examples of places where personal information may be needed for certain optional online activities are as follows:
Mailing List: To register for our newsletters and other updates or activities of the Foundation you will need to provide us with your name, mailing address, and email address (if digital communications are desired). If you no longer desire to receive our communications, you may follow the “unsubscribe” instructions included in our communications and/or contact us directly and request that your email address or physical address be removed from the mailing list.
Contributions: If you choose to make a financial contribution to the Foundation, we will need to collect your mailing information and standard credit card information (card number, card type, expiration date) and keep a record of your financial transaction. Credit card numbers are held only until the charge can be processed (usually several minutes), then the number is only available to the Development department for purposes of problem resolution.
Ordering of Merchandise: If you choose to order merchandise from the Foundation, we maintain a record of your transaction. Any financial information will be treated as described above in “Contributions.”
Brain Donation Program: If you are interested in donating brain tissue to the Foundation’s Brain Donation Program for diagnosis and research, you will need to provide specific personal information in accordance with the forms contained in the CurePSP Brain Donation Brochure. The information you provide will be used to facilitate your donation and for research purposes and will not, under any circumstances, be sold to other organizations or third parties. Some personal information may be shared with third parties involved in the brain donation process, such as the Mayo Clinic, which hosts CurePSP’s Brain Bank.
“Forum Membership” Registration and Participation: When you register as a “member” of the CurePSP Forum, you will be required to provide your email address, member name and password. In addition, you have the option of letting forum members contact you via email in the future. This form also requests additional information, including name, state, occupation and hobbies. This information helps us define the demographic make-up of your visitors online. If you choose to participate in our public forum, please remember that any information that you disclose in these areas becomes public information. You should exercise caution when deciding whether or not to disclose your personal information.
Information We Collect Automatically
In order to review the success of this Site and how it can be improved, we keep regular logs of use regarding content and services. Information collected includes, but is not limited to, pages viewed, browsers used to access the site, search terms used and various other non-personally identifiable statistical data. This information is only collected and viewed as aggregated data, without reference to individual users. We may share this aggregate statistical information with other outside companies, but in doing so; we will not disclose personal information. Some examples of how we aggregate such information are as follows:
Cookies: Cookies allow us to customize the information we provide according to your profile and preferences. Widely used on the internet, cookies have become an industry standard. Although a cookie cannot, in and of itself, identify you, it can identify your computer. Your browser is most likely set up to accept cookies automatically. If you’d like to disable cookies, you may do so by adjusting the options or preferences in your browser. However, by doing so, you may lose some of the functionality of our website. For example, cookies must be turned on in your browser to participate and use the public forum. Cookies are used in our public forum to hold your username, password and viewing options, which allow you to login.
IP Addresses: An IP address is a number that is automatically assigned to your computer whenever you begin service with an internet service provider. We may collect IP addresses for the purposes of system administration and to audit the use of this Site. Each time you log onto this Site and each time you request one of our pages, our server logs your IP address. Although we log your session with us, we will not normally link your IP address to anything that can enable us to identify you.
The Foundation utilizes secure sockets layer, or SSL, to protect information. SSL is an encryption technology that provides secure communications over the Internet. It does this by verifying that the server to which you are connected is actually the one it claims to be. It also encrypts all transactions between the parties communicating. Encryption is the scrambling of information as it is transmitted over the Internet to protect your confidentiality.
Our Site uses SSL protocol when secure communication with you is necessary. For example, SSL protocol is active when you make a donation, which means that the personal and credit card information passing between your computer and our server is encrypted. This means that while your information is in transit it is scrambled so that only the Foundation can reassemble it in its original text format.
Notwithstanding anything to the contrary, we may release your personal information to third parties: (1) to comply with valid legal requirements such as a law, regulation, search warrant, subpoena or court order; or (2) in special cases, such as a physical threat to you or others.
Operation of this Site
This Site is operated and maintained by outside contractors that may have access to your personal information in the course of hosting or maintaining this Site. Access to your personal information by these contractors is limited to the information necessary for the contractor to perform its limited function for us. The servers used to operate this Site are located within the continental United States.
Neither this Site nor any of its content or services are designed or intended to attract children under the age of 13. We will not knowingly collect personal information from children under 13 unless we receive their parent’s written consent or we are otherwise permitted by law.
Changes in Corporate Structure
In developing our organization, we might sell certain assets or the organization, or parts of it, may be sold, merged or otherwise transferred. In such transactions, user information, whether personally identifiable or otherwise, may be one of the transferred assets.
We reserve the right to update this policy at any time. If a material change is made to the policy, we will post those changes in this space. Please check our privacy page periodically to review any changes that may have been made.
How to Correct or Update Information
Your Acceptance of These Terms
The information provided on the Foundation’s website is intended to foster communication about progressive supranuclear palsy, corticobasal degeneration and related brain diseases, for both healthcare professionals and the public. It is not intended to take the place of professional medical advice. If you are a patient currently being treated and have questions, or if you think you have progressive supranuclear palsy, corticobasal degeneration or a related brain disease, but have not been diagnosed, please seek the advice of your healthcare professional. This information should not replace consultation with your physician.
The user acknowledges that any collection or compilation of data may involve the likelihood of human and machine errors, omissions, delays, interruptions, and losses. This includes the inadvertent loss of data or damage to media giving rise to loss or damage. Accordingly, the user agrees that the Site is provided “as is.” The Foundation makes no representation or warranty with respect to its accuracy, completeness, or currency. The Foundation specifically disclaims any other warranty (express, implied, or statutory), including but not limited to, the implied warranties of merchantability and fitness for a particular purpose. The user agrees that in no event will the Foundation be liable for the results of site usage or for direct, indirect, special, or consequential damages.
Meeting schedules and educational opportunities: the Foundation makes every effort to publish accurate meeting information. Neither the Foundation nor its employees assume liability for errors in these listings. Verify all pertinent meeting details with the sponsoring organization BEFORE making your travel plans or other arrangements.
Hyperlinks to commercial sites: the Foundation is not responsible for the content, products, or services of externally linked websites. As you leave the Foundation’s website, please be advised that you are entering commercial web space. External sites are not endorsed by the Foundation nor is there implied endorsement of any company or product(s).
Gift Acceptance Policy
These policies and guidelines govern the acceptance of gifts by the Foundation and provide guidance to staff and Board members in their discussions with prospective donors and their advisers. The provisions of these policies shall apply to all gifts received and accepted by the foundation for its purposes or services. Click here for more information.
CurePSP Research Policy and Procedures
The Foundation for PSP, CBD, and Related Brain Diseases (hereinafter called CurePSP) research program supports and promotes research that can advance understanding, treatment and prevention of progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), amyotrophic lateral sclerosis-parkinsonism-dementia complex (ALS/PDC) of Guam and/or Guadeloupian tauopathy and other atypical Parkinsonian disorders and tauopathies such as frontotemporal dementia, multiple system atrophy, or chronic traumatic encephalopathy. Click here for more information.
CurePSP is a registered 501(C)(3) charity within the United States. EID: 52-1704978