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.
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.
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.
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.
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.
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.
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
CurePSP will fund studies on PSP and CBD with a particular interest in molecular and cellular (pathological) mechanisms that may operate also in related diseases. We provide grants to scientists of up to $100,000 for one- or two-year studies. These are carefully evaluated by our distinguished global Scientific Advisory Board (SAB) in collaboration with our Vice President-Scientific Affairs and the Board of Directors Research Committee. Because of that, these studies offer donors the opportunity to name and be involved with hand-selected and intensively administered research that provides the greatest return on investment for the donor dollar. Click here for more information.
CurePSP is a registered 501(C)(3) charity within the United States. EID: 52-1704978
Policy for Engaging with Industry
CurePSP, Inc., is a 501(c)(3) nonprofit organization whose mission is to improve the lives of those affected by prime of life neurodegeneration, including PSP, CBD and related diseases, through patient and family advocacy, education and awareness, and research funding. The vision of CurePSP is a world free of neurodegenerative disease.
To accomplish this mission, CurePSP has created, and seeks to enhance, a landscape that encourages investment in research into prime of life neurodegeneration. This includes actively engaging and collaborating with pharmaceutical companies.
CurePSP has developed this policy to ensure the highest level of ethical conduct is followed in CurePSP’s collaborations with pharmaceutical companies. CurePSP’s goal in engaging pharmaceutical companies is to enable development of therapies to meet patient needs while maintaining independence and neutrality as a patient organization.
CurePSP’s priority is serving the best interests of patients and families, and no relationships with pharmaceutical companies will influence CurePSP’s efforts to advocate for accessible, affordable treatments for patients or cause CurePSP to provide biased or incorrect information.
CurePSP’s approach to interacting with pharmaceutical companies was influenced by the policies of other similarly sized health organizations, including the European Federation of Pharmaceutical Industries and Associations (EFPIA) “Code on Interactions between Pharmaceutical Companies and Patient Organizations” and the Pharmaceutical Manufacturers of America (PhRMA) “Principles on Interactions with Patient Organizations.”
The principles outlined in this Policy are intended to guide CurePSP, including board members, staff, committees and all related parties engaging with the pharmaceutical industry.
CurePSP seeks mutually beneficial dialogue and information exchange with pharmaceutical companies developing potential therapies for prime of life neurodegenerative diseases according to the following:
- CurePSP will actively engage with companies that show interest or activity in drug discovery, preclinical research or clinical research into prime of life neurodegeneration including PSP, CBDand related diseases.
- CurePSP will collaborate with companies, at CurePSP’s discretion and in consultation with our Vice President – Scientific Affairs, Scientific Advisory Board (SAB), and board of directors Research Committee, which are supporting ethical, high-quality research in a responsible manner, according to industry and international regulatory standards.
- CurePSP will seek insight into the company’s objectives, plans and the potential drug being evaluated and will provide companies with community-wide insight and perspective as needed and appropriate.
- CurePSP will advocate on behalf of the patient community to make new therapies accessible: medications can only change lives if patients have access to them.
- CurePSP will actively seek the guidance and utilize the expertise of the CurePSP SAB and Research Committee throughout the process of working with each company.
- CurePSP board members, and members of the SAB and Research Committee will disclose any and all relationships with companies with which CurePSP engages and will annually sign a statement agreeing to CurePSP’s conflict of interest policy.
CurePSP encourages and enables direct dialogue between patients and pharmaceutical company representatives for the purposes of promoting disease awareness and sharing patient perspective, according to the following principles:
- Direct interactions between patients and pharmaceutical companies are best arranged with the involvement of CurePSP because including a patient organization in these interactions can: (i) ensure fairness and transparency within the patient community; (ii) ensure that the patient community is well and adequately represented to the pharmaceutical company; (iii) allow for access to experts and professional advisers who can inform the dialogue; (iv) help avoid misunderstanding in the conversation; (v) ensure the protection of patient privacy in any data collection activities; (vi) allow for the formation of an advisory group, when appropriate; and (vii) allow CurePSP to better understand the needs of both the patient and the pharmaceutical company.
- Any information learned from these interactions should be shared in an open manner.
- Personal health data are not recorded by the company without proper informed consent, and patient identifiers are not recorded at all.
- For the purpose of raising awareness and providing education about prime of life neurodegeneration, CurePSP board members, staff or individuals representing the disease community may be invited by pharmaceutical companies to speak about prime of life neurodegeneration at internal company meetings, public events hosted by the company or in meetings with industry associations and regulatory agencies.
- To avoid any potential appearance of conflict of interest, board members, who have a fiduciary responsibility to CurePSP and direct the acceptance and use of funds provided by pharmaceutical companies, should not testify at regulatory hearings. Patients and members of the disease community with a connection to the pharmaceutical company, such as relative of an employee or ownership of stock in the company, should also not testify at regulatory hearings.
All collaboration and communication efforts outlined in this Policy will be conducted with pharmaceutical companies regardless of their financial support of CurePSP, or lack thereof. CurePSP requires funding to achieve its mission and vision to improve the lives of all patients affected by prime of life neurodegeneration and therefore, CurePSP may from time to time be engaged by pharmaceutical companies on a paid fee basis to aid in clinical trials, or accept sponsorships from pharmaceutical companies for professional events and other mission-critical projects, according to the following principles:
- Financial contributions from a pharmaceutical company should be initiated by a written request from CurePSP stating the organization’s mission, activities, programs and reason for the request.
- Assignments to help pharmaceutical companies in conducting their clinical trials should be subject to specific contractual terms and a detailed scope of work (SOW).
- Donations or financial contributions from pharmaceutical companies must be given in a named manner; CurePSP does not accept anonymous contributions or fees from pharmaceutical companies.
- Financial contributions should be made either as (a) an unrestricted grant, (b) sponsorship of a specific activity or program initiated by CurePSP to support its stated mission, or (c) compensation for specific services rendered.
- CurePSP board members and staff may not receive honoraria to speak on behalf of CurePSP. Reasonable travel expenses incurred to participate in disease-awareness activities may be reimbursed directly to the individual or the organization against presentation of customary supporting documentation.
CurePSP will provide information about clinical trials, according to the following principles:
- CurePSP shares information about clinical trials with the community to ensure that patients and families are aware of clinical trials and have the opportunity to make informed decisions about participating. The choice to participate in any given trial is an individual one; CurePSP does not seek to influence that choice, but rather to ensure informed decisions can be made. Patients and families with questions about various trials will be provided with factual information regarding all options and directed to their provider.
- CurePSP disseminates accurate, fair and balanced information about clinical trials provided by the pharmaceutical company without additional commentary or opinion that may influence an individual’s decision to participate in a clinical trial or that may change the meaning of the information.
- CurePSP recognizes that the choice to share information regarding participation in a clinical trial is personal, and does not seek or encourage the sharing of individual clinical trial experiences in social media, email, or other means. However, when unsolicited information is shared on CurePSP’s social media platforms, CurePSP provides pharmaceutical companies with community-wide observations and insight regarding needs and barriers to participation to encourage optimal design and implementation of the trial.
- CurePSP board members, consultants, volunteers and staff have the responsibility to represent CurePSP ethically through their conduct and statements. Information about clinical trials that is accessible to the community via social media, including in personal blogs or other forms of communication, must adhere to the principles outlined in this Policy.
- CurePSP only provides information about clinical trials that have been approved by appropriate regulatory bodies.
- CurePSP does not communicate information in a manner that could be interpreted as advertising or promoting a drug or treatment that has not been so approved.
CurePSP places high value on the privacy of patients. CurePSP does not disclose any personal information or information that can identify a patient. The collection of personal health information by a pharmaceutical company for research purposes should be guided by a protocol and reviewed by an ethics committee of the board, or the board as a whole. Provision of this information by patients and their families is entirely voluntary.
This website is provided for informational purposes only. It is not intended to provide medical advice. It is strongly recommended that persons wishing to use information obtained on this website first consult with their medical practitioner.
Every effort has been made to ensure that the information on this website is correct, but CurePSP does not accept any responsibility for action or omission based on inadvertently incorrect information posted on this website by CurePSP or by any of our constituents. The CurePSP site contains certain links to other websites whose content might be of interest to our visitors. CurePSP is not responsible for the material at such linked sites and presence of such a link does not constitute an endorsement by CurePSP of material on the linked site.