Last Updated July 18, 2020

INTRODUCTION

Welcome to the website (the “Site”) of LuMind IDSC Foundation, a non-profit 501(c)(3) entity (“LuMind IDSC,” “we,” “us,” or “our”). LuMind IDSC is dedicated to accelerate research to increase availability of therapeutic, diagnostic, and medical care options and to empower individuals with Down syndrome and their families through education, connections, and support.

The Site has been created to further LuMind IDSC’s mission. LuMind IDSC also makes available through the Site the myDSC program (“myDSC”) (collectively, including the Site, the “Service”), a free membership program available to individuals with Down syndrome, their families, caregivers and loved ones, which grants access to resources such as informative videos, articles, podcasts, webinars, infographics, polls, and challenges to help members reach their loved one’s personal goals for a healthy and independent life with Down syndrome as well as an access to evidence-based research and medical care information.

This Privacy Policy applies to Personal Data that we collect from you as a myDSC membership applicant or myDSC member or other user of the Service, or as a participant in research we may sponsor from time to time. It explains what Personal Data (defined below) we collect, how we use and share that data, and your choices concerning our data practices.

Before using the Service or otherwise submitting any Personal Data to LuMind IDSC, please review this Privacy Policy carefully and contact us at privacy@LuMindIDSC.org if you have any questions. By using the Service or submitting Personal Data to us, you agree to the practices described in this Privacy Policy. If you do not agree to this Privacy Policy, please do not use the Service or submit Personal Data to us.

1. PERSONAL DATA WE COLLECT


We collect information that alone or in combination with other information in our possession could be used to identify you (“Personal Data”) as follows:

Information Collected from Site Users

We collect information that you provide when you interact with our Site, such as when you request content, make a donation, apply to join LuMind IDSC as an organization or participate in surveys. Certain information is also logged automatically in our systems. The information we collect or receive is described below. 

  • Requesting or Submitting Information or Content. We collect Personal Data that you provide when you choose to interact with our Site by entering Personal Data into form fields, request information, ask to download content, sign up for events, post comments on pages, projects, or our blog, or subscribe to emailing lists. You decide what Personal Data is provided to LuMind IDSC, but this typically includes your name, email address or other contact information, and any other information that you elect to share. 
     
  • Communicating With Us. We may collect information when you contact us with questions or concerns and when you voluntarily respond to questionnaires, surveys or requests for market research seeking your opinion and feedback. Providing communication data is optional to you. 

  • Making a Donation. When you make a donation on our Site, we collect Personal Data such as your name, email address, the financial information needed to process the donation, which may include your billing address, and information about your donation, including the amount of your donation. We also collect (but do not retain) credit card numbers which are processed by a third-party payment processor. If you use PayPal, Apple Pay or a similar service, their use of your information is based on their terms of service and policies, not ours, so we encourage you to review those policies carefully. When you make a donation in honor or memory of a loved one, we collect name and last name of the recipient and, if you elect to provide this information, the mailing address of the recipient. We will also share your name and date of donation with the recipient. 

  • Contests, Promotions, and Surveys. Periodically, LuMind IDSC may invite you to participate in contests, take advantage of special promotions, and complete online surveys or participate in focus groups and we will collect the information that you provide when participating in such initiatives. This information may include information about signs and symptoms of certain medical conditions, types of medicine your loved one takes, or you or your loved ones’ behaviors, challenges and interests. If you have provided your name and email address when participating in these contests, promotions, and surveys, information we collect from these contests, promotions, and surveys or focus groups may be associated with you personally.  

  • Demographic Data. We collect your age and gender if you chose to provide it. Some of our surveys may ask you to provide information about your income level, however this information will not identify you (“de-identified”).  

  • Social Media Data. We have pages on social media sites like Facebook, Twitter, LinkedIn, Instagram and YouTube (“Social Media Pages”). When you interact with our Social Media Pages, we will collect Personal Data that you elect to provide to us, such as your contact details. In addition, the companies that host our Social Media Pages may provide us with aggregate information and analytics regarding the use of our Social Media Pages. 

  • Internet Activity Data. As a visitor to our Site, LuMind IDSC’s servers automatically record certain information about your visit, use, or interactions with our Site, such as your Internet Protocol (“IP”) address (so we understand which country you are connecting from when you visit the Site), which page(s) are visited, the domains our visitors come from (e.g., google.com, yahoo.com, etc.), and which browsers people use to access the Site (e.g., Chrome, Firefox, Microsoft Internet Explorer, etc.), broad geographical information, and navigation patterns In particular, the following information is created and automatically logged in our systems:
    • Log Data: Information that your browser automatically sends whenever you visit the Site. Log Data includes your IP address, browser type and settings, the date and time of your request, and how you interacted with the Site.
    • Cookies Data: Please see the “Cookies” section below to learn more about how we use cookies.
    • Device Data: Includes name of the device, operating system, and browser you are using. Information collected may depend on the type of device you use and its settings.
    • Usage Data: We collect information about how you use our Site, such as the types of content that you view or engage with, the features you use, the actions you take, and the time, frequency, and duration of your activities.
    • Location Data: We derive a rough estimate of your location from your IP address.
    • Email Open/Click Data: We use pixels in our email campaigns that allow us to collect your email and IP address as well as the date and time you open an email or click on any links in the email.

    Personal Data Collected From myDSC Members

    When you apply to join myDSC or use its features, we collect additional Personal Data as described below.

  • Join myDSC: When you apply to join myDSC, we collect your first and last name, date of birth, postal and email address, type of residence. You can choose to provide additional information about your or your loved one, such as your phone number, the topics you are interested in, a photo, etc. If you have a loved one with Down syndrome, you will be requested to provide information on the loved one, such as first and last name, date of birth, address.  

  • Submitting Questions: Some features of myDSC enables you to submit questions about general health care topics to health care professionals, such as doctors. LuMind IDSC will collect your questions and the responses, and the responses will be posted to the Site in a way that does not identify you (“de-identified”).  

    Medical Disclaimer: The information on this Site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, videos, images and information, contained on or available through this Site is for general information purposes only. LuMind IDSC makes no representation and assumes no responsibility for the accuracy of information contained on or available through this Site, including the responses to any questions submitted to health care professionals, and such information is subject to change without notice. You are encouraged to confirm any information obtained from or through this Site with other sources, and review all information regarding any medical condition or treatment with your physician. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY SEEKING MEDICAL TREATMENT BECAUSE OF SOMETHING YOU HAVE READ ON OR ACCESSED THROUGH THESE WEBSITES. IF YOU OR A LOVED ONE ARE EXPERIENCING A MEDICAL EMERGENCY, CALL 911 OR YOUR LOCAL EMERGENCY NUMBER.

    LuMind IDSC does not recommend, endorse or make any representation about the efficacy, appropriateness or suitability of any specific products, procedures, treatments, services, opinions, health care providers, or other information that may be contained on or available through any LuMind IDSC website. LUMIND IDSC IS NOT RESPONSIBLE NOR LIABLE FOR ANY ADVICE, COURSE OF TREATMENT, DIAGNOSIS OR ANY OTHER INFORMATION, SERVICES OR PRODUCTS THAT YOU OBTAIN THROUGH OUR SITES.

  • Member Polls: Periodically, LuMind IDSC may invite you to participate in polls to gain a better understanding of our constituents and their needs. Information we collect from these polls may be associated with you personally. 

Personal Data Collected When We Conduct Research Activities

When you apply to and/or participate in a research study sponsored by us, including the study on tracking symptoms and challenges of Alzheimer’s disease in people with Down syndrome using the myGoalNavTM online platform provided by Ardea Outcomes (collectively, “Research”), our research partners (such as contract research organizations and, for the myGoalNavTM, Ardea Outcomes – “Research Partner”) will collect the information that you provide when you choose to enroll in Research, which may include your name, email address, address, age group, gender, relationship to the caregiver, and health related information provided as a part of the applicable Research. We will use the data collected through the Research, in an aggregate form, to help our research and for the purposes disclosed in the informed consent form provided to you in connection with your participation in the Research. To the extent you qualify for and are enrolled as a participant in Research, the terms of the applicable informed consent form will apply and will control over this Privacy Policy. Our Research Partners’ use of Personal Data collected as a part of the Research is governed by our contracts with them and the Research Partner’s own privacy policies. Each Research Partner will have its own privacy policy and its privacy practices may differ from the practices described in this Privacy Policy. We are not responsible for the privacy policies or privacy practices of Research Partners or other third parties.

Personal Data Collected from Other Sources

We may obtain information about you from volunteers who host our events (for example, when you make a donation through a volunteer’s platform) or from crowdfunding platforms that host fundraising campaigns. We may also obtain information about you from public records and from databases like OFAC when conducting due diligence on nonprofit organization or conducting fraud prevention checks on donations.

2. HOW WE USE PERSONAL DATA

We may use Personal Data for the following purposes:

  • To respond to your inquiries, comments, feedback, or questions;
  • When you register for myDSC, to provide access to myDSC and provide the products, services and features available through the myDSC, including providing targeted offerings to you as a member based on your loved one with Down syndrome’s ages and topics of interest and personalizing your experience on myDSC, allowing you to comment on content, participate in online games, contests, promotions or rewards programs and providing you with related support; 
  • To send administrative information to you, for example, information regarding the Service and changes to our terms, conditions, and policies;
  • To process and fulfill your donations, contact you regarding any questions related to your donation, and notify your loved ones about your donation in their honor if you ask us to; 
  • To send you updates on how your donation has been used, project appeals, newsletters, events, promotional materials or notifications related to LuMind IDSC’s products and services and/or the products and services of third parties we think will be of interest to you. You may opt out of receiving emails by following the instructions contained in each promotional email we send you. You can also update your marketing preferences through settings in your myDSC account profile. In addition, if at any time you do not wish to receive future marketing communications, you may contact us. If you unsubscribe from our marketing lists, you will no longer receive marketing communications but we will continue to contact you regarding management of your account, other administrative matters, and to respond to your requests.
  • To conduct research and for other purposes that will be disclosed to you in the applicable informed consent form, if you are a participant in a Research;
  • To operate the Service and our business, and to develop new products, features and services;
  • To analyze how you interact with our Service, including compiling aggregate statistics that allow us to understand how visitors or members use our Service, and to make improvements in design and content to better serve you;
  • To prevent fraud, criminal activity, or misuses of our Service, and to ensure the security of our IT systems, architecture, and networks; and 
  • To comply with legal obligations and legal process and to protect our rights, privacy, safety, or property, and/or that of our affiliates, you, or other third parties.

3. SHARING AND DISCLOSURE OF PERSONAL DATA

In certain circumstances we may share the categories of Personal Data described above without further notice to you, unless required by the law, with the following categories of third parties: 

  • Vendors and Service Providers: We may share your Personal Data with certain vendors and service providers who help us manage or provide our products and services, including Research Partners, providers of hosting services, cloud services, and other information technology services providers, event management services, email communication software and email newsletter services, advertising and marketing services, payment processors, customer relationship management and customer support services, and web analytics services. Pursuant to our instructions, these parties will access, process, or store Personal Data in the course of performing their duties to us. 
  • Donations. When you make a donation that is part of a campaign sponsored by your employer, and/or when your employer is being asked to match your donation, we may share your name and the amount of you donation with your employer. We may also identify you as a donor on our Site, for example in annual reports, or in appeal emails.  
  • Aggregated Data: From time to time, we may analyze the general behavior and characteristics of users of our Service and share aggregated information like general user statistics and aggregated demographic information with prospective business partners.
  • Business Transfers: If we are involved in a merger, acquisition, financing due diligence, reorganization, bankruptcy, receivership, sale of all or a portion of our assets, or transition of service to another provider (collectively a “Transaction”), your Personal Data and other information may be shared in the diligence process with counterparties and others assisting with the Transaction and transferred to a successor or affiliate as part of that Transaction along with other assets.
  • Legal Requirements: If required to do so by law or in the good faith belief that such action is necessary to (i) comply with a legal obligation, including to meet national security or law enforcement requirements, (ii) protect and defend our rights or property, (iii) prevent fraud, (iv) act in urgent circumstances to protect the personal safety of users of the Service, or the public, or (v) protect against legal liability. 
  • Other Users/the Public: Certain features on our Service give you an opportunity to interact with us and others. These may include forums, message boards, chats, and creating community profiles. When you use these features, you should be aware that any information you submit, including your name, location and email address, may be publicly available to anyone, including other users, search engines, advertisers, third party application developers, and anyone else with access to the Service. We are not responsible for any information you choose to submit and make public through these interactive features. 

4. COOKIES

We use cookies to operate and administer our Site, gather usage data on our Site, and improve your experience on it. A “cookie” is a piece of information sent to your browser by a website you visit. Cookies can be stored on your computer for different periods of time. Some cookies expire after a certain amount of time, or upon logging out (session cookies), others survive after your browser is closed until a defined expiration date set in the cookie (as determined by the third party placing it), and help recognize your computer when you open your browser and browse the Internet again (persistent cookies). For more details on cookies please visit All About Cookies.

On most web browsers, you will find a “help” section on the toolbar. Please refer to this section for information on how to receive a notification when you are receiving a new cookie and how to turn cookies off. Please see the links below for guidance on how to modify your web browser’s settings on the most popular browsers: 

Please note that if you limit the ability of websites to set cookies, you may be unable to access certain parts of the Site and you may not be able to benefit from the full functionality of the Site.

Advertising networks may use cookies to collect Personal Data. Most advertising networks offer you a way to opt out of targeted advertising. If you would like to find out more information, please visit the Network Advertising Initiative’s online resources at http://www.networkadvertising.org and follow the opt-out instructions there.

If you access the Site on your mobile device, you may not be able to control tracking technologies through the settings.

Analytics: We use Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google Analytics uses cookies to help us analyze how users use the Site and enhance your experience when you use the Site. For more information on how Google uses this data, go to www.google.com/policies/privacy/partners/.

Online Tracking and Do Not Track Signals: We and our third party service providers, including Facebook, may use cookies, pixels, or other tracking technologies to collect information about your browsing activities over time and across different websites following your use of the Site. We make reasonable commercial efforts to recognize and support “Do Not Track” signals.

5. DATA RETENTION

We keep Personal Data for as long as reasonably necessary for the purposes described in this Privacy Policy, while we have a business need to do so, or as required by law (e.g. for tax, legal, accounting, or other purposes), whichever is longer.

6. CHILDREN

Our Service is not directed to children who are under the age of 13. LuMind IDSC does not knowingly collect Personal Data from children under the age of 13. If you have reason to believe that a child under the age of 13 has provided Personal Data to LuMind IDSC through the Service please contact us and we will endeavor to delete that information from our databases.

7. LINKS TO OTHER WEBSITES

The Service may contain links to other websites not operated or controlled by LuMind IDSC, including social media services and sites of our partners (links to which appear on the Site) (“Third Party Sites”). The information that you share with Third Party Sites will be governed by the specific privacy policies and terms of service of the Third Party Sites and not by this Privacy Policy. By providing these links we do not imply that we endorse or have reviewed these sites. We encourage you to read the relevant Third Party Site’s policies before submitting any Personal Data to those sites.

8. SECURITY

You use the Service at your own risk. We implement commercially reasonable technical, administrative, and organizational measures to protect Personal Data both online and offline from loss, misuse, and unauthorized access, disclosure, alteration, or destruction. However, no Internet or e-mail transmission is ever fully secure or error free. In particular, e-mail sent to or from us may not be secure. Therefore, you should take special care in deciding what information you send to us via the Service or e-mail. Please keep this in mind when disclosing any Personal Data to LuMind IDSC via the Internet. In addition, we are not responsible for circumvention of any privacy settings or security measures contained on the Service, or third party websites.

 

9. INTERNATIONAL USERS

By using our Service or otherwise providing us with your Personal Data, you understand and acknowledge that your Personal Data will be transferred from your location to our facilities and servers in the United States.

10. YOUR CHOICES

In certain circumstances providing Personal Data is optional. However, if you choose not to provide Personal Data that is needed to use some features of our Service, you may be unable to use those features. You can also contact us to ask us to update or correct your Personal Data and, for Personal Data provided in connection with your use of the myDSC, you can log in to your account to amend your choices with respect to your information.

11. CHANGES TO THE PRIVACY POLICY

The Service and our business may change from time to time. As a result we may change this Privacy Policy at any time. When we do we will post an updated version on this page, unless another type of notice is required by the applicable law. By continuing to use our Service or providing us with Personal Data after we have posted an updated Privacy Policy, or notified you by other means if applicable, you consent to the revised Privacy Policy and practices described in it.

12. CONTACT US

If you have any questions about our Privacy Policy or information practices, please feel free to contact us by email at privacy@LuMindIDSC.org, or by post at:

LuMind IDSC Foundation
20 Mall Road, Suite 200
Burlington, MA 01803-4126
United States
Phone: +1 781-825-1300