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Usher 1F Collaborative
  • About Us
    • Our Story, Mission & Vision
    • What Is Usher Syndrome?
    • Who Are We?
    • Our Ten-Year Journey
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    • Financials
    • Contact Us
  • The Research
    • Usher 1F Research Network
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    • RUSH1F - Usher 1F Natural History Study
  • Usher 1F Stories
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    • Usher 1F Collaborative News
    • Usher 1F Collaborative Media Coverage
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  • Take Action
    • Donate
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    • Laurie and Gary Shapiro Memorial Fund
    • Fundraising Toolkit
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    • Seeing Forward brochure
  • USHER 1F CANADA
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Stories from Usher 1F Canada

Usher 1F Canada Stories

Canadian Overview

Read about Usher 1F patients from around the world, including those of us who are Canadians.

  • Diego
    Diego
  • Finley
    Finley
  • Pierson
    Pierson
  • Rachel
    Rachel
  • Jessica
    Jessica
  • Zachary
    Zachary
  • Andi and Aaron
    Andi and Aaron
  • Victor
    Victor
  • Chase and Jax
    Chase and Jax
  • Bella and Ismail
    Bella and Ismail
  • Ebba
    Ebba
  • Juanito
    Juanito
  • Harry
    Harry
  • Jaime
    Jaime
  • Liz
    Liz
  • Brendan
    Brendan
  • Tzila
    Tzila
  • Dorie
    Dorie
  • Anna
    Anna
  • Alex
    Alex
  • 1
  • 2
  • Usher 1F Collaborative Canada
  • Illuminating the Future
  • Catch The Ace
  • Usher 1F Collaborative Canada Board
  • Usher 1F Canada Stories
  • Donate - Canada
  • Contact us
Usher 1F Collaborative
Usher 1F Collaborative, Inc.
321 Walnut Street, #228
Newtonville, Massachusetts 02460-1927
Phone 339.221.2743
Usher 1F Collaborative Canada
P.O. Box 91012
Kanata RPO Signature CTR, ON K2T 2A3
Phone 339.221.2743
  • About Us
    • Our Story, Mission & Vision
    • What Is Usher Syndrome?
    • Who Are We?
    • Our Ten-Year Journey
    • Resources and Partnerships
    • Financials
    • Contact Us
  • The Research
    • Usher 1F Research Network
    • Areas of Focus
    • RUSH1F - Usher 1F Natural History Study
  • Usher 1F Stories
  • News & Events
    • Usher 1F Collaborative News
    • Usher 1F Collaborative Media Coverage
    • Newsletters
    • Relevant Research in the News
    • Event Calendar
    • Past Conferences
  • Take Action
    • Donate
    • Become a Luminary Donor
    • Volunteer
    • Get Connected
    • Get Genetic Testing
    • Laurie and Gary Shapiro Memorial Fund
    • Fundraising Toolkit
  • Donate
  • SEEING FORWARD
    • SEEING FORWARD
    • Seeing Forward brochure
  • USHER 1F CANADA
    • Usher 1F Collaborative Canada
    • Illuminating the Future
    • Catch The Ace
    • Usher 1F Collaborative Canada Board
    • Usher 1F Canada Stories
    • Donate - Canada
    • Contact us
Privacy Policy

Privacy Policy

  1. What Information Do We Collect? When you visit our website you may provide us with two types of information: personal information you knowingly choose to disclose that is collected on an individual basis and website use information collected on an aggregate basis as you and others browse our website.
  2. Personal Information You Choose to Provide We may request that you voluntarily supply us with personal information, including your email address, postal address, home or work telephone number and other personal information for such purposes as correspondence, placing an order, requesting an estimate, or participating in online surveys. If you choose to correspond with us through email, we may retain the content of your email messages together with your email address and our responses. We provide the same protections for these electronic communications that we employ in the maintenance of information received by mail and telephone.
  3. Website Use Information Similar to other websites, our site may utilize a standard technology called "cookies" (see explanation below, "What Are Cookies?") and web server logs to collect information about how our website is used. Information gathered through cookies and server logs may include the date and time of visits, the pages viewed, time spent at our website, and the sites visited just before and just after ours. This information is collected on an aggregate basis. None of this information is associated with you as an individual.
  4. How Do We Use the Information That You Provide to Us? Broadly speaking, we use personal information for purposes of administering our business activities, providing service and support and making available other products and services to our customers and prospective customers. Occasionally, we may also use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. The lists used to send you product and service offers are developed and managed under our traditional standards designed to safeguard the security and privacy of all personal information provided by our users. You may at any time to notify us of your desire not to receive these offers.
  5. What Are Cookies? Cookies are a feature of web browser software that allows web servers to recognize the computer used to access a website. Cookies are small pieces of data that are stored by a user's web browser on the user's hard drive. Cookies can remember what information a user accesses on one web page to simplify subsequent interactions with that website by the same user or to use the information to streamline the user's transactions on related web pages. This makes it easier for a user to move from web page to web page and to complete commercial transactions over the Internet. Cookies should make your online experience easier and more personalized.
  6. How Do We Use Information Collected From Cookies? We use website browser software tools such as cookies and web server logs to gather information about our website users' browsing activities, in order to constantly improve our website and better serve our users. This information assists us to design and arrange our web pages in the most user-friendly manner and to continually improve our website to better meet the needs of our users and prospective users. Cookies help us collect important business and technical statistics. The information in the cookies lets us trace the paths followed by users to our website as they move from one page to another. Web server logs allow us to count how many people visit our website and evaluate our website's visitor capacity. We do not use these technologies to capture your individual email address or any personally identifying information about you.
  7. Notice of New Services and Changes Occasionally, we may use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. As a user of our website, you will be given the opportunity to notify us of your desire not to receive these offers by clicking on a response box when you receive such an offer or by sending us an email request.
  8. How Do We Secure Information Transmissions? When you send confidential personal information to us on our website, a secure server software which we have licensed encrypts all information you input before it is sent to us. The information is scrambled en route and decoded once it reaches our website. Other email that you may send to us may not be secure unless we advise you that security measures will be in place prior to your transmitting the information. For that reason, we ask that you do not send confidential information such as Social Security, credit card, or account numbers to us through an unsecured email.
  9. How Do We Protect Your Information? Information Security -- We utilize encryption/security software to safeguard the confidentiality of personal information we collect from unauthorized access or disclosure and accidental loss, alteration or destruction. Evaluation of Information Protection Practices -- Periodically, our operations and business practices are reviewed for compliance with organization policies and procedures governing the security, confidentiality and quality of our information. Employee Access, Training and Expectations -- Our organization values, ethical standards, policies and practices are committed to the protection of user information. In general, our business practices limit employee access to confidential information, and limit the use and disclosure of such information to authorized persons, processes and transactions.
  10. How Can You Access and Correct Your Information? You may request access to all your personally identifiable information that we collect online and maintain in our database by emailing us using the contact form provided to you within the site structure of our website.
  11. Do We Disclose Information to Outside Parties? We may provide aggregate information about our customers, sales, website traffic patterns and related website information to our affiliates or reputable third parties, but this information will not include personally identifying data, except as otherwise provided in this privacy policy.
  12. What About Legally Compelled Disclosure of Information? We may disclose information when legally compelled to do so, in other words, when we, in good faith, believe that the law requires it or for the protection of our legal rights.
  13. Permission to Use of Materials The right to download and store or output the materials in our website is granted for the user's personal use only, and materials may not be reproduced in any edited form. Any other reproduction, transmission, performance, display or editing of these materials by any means mechanical or electronic without our express written permission is strictly prohibited. Users wishing to obtain permission to reprint or reproduce any materials appearing on this site may contact us directly.
Terms & Conditions

Terms & Conditions

Donation Refund Policy

We are grateful for your donation and support of our organization. If you have made an error in making your donation or change your mind about contributing to our organization please contact us. Refunds are returned using the original method of payment. If you made your donation by credit card, your refund will be credited to that same credit card.

Automated Recurring Donation Cancellation

Ongoing support is important to enabling projects to continue their work, so we encourage donors to continue to contribute to projects over time. But if you must cancel your recurring donation, please notify us.
Usher 1F Collaborative
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  • Fundraising Disclosure Statement
    Fundraising Disclosure Statement

    Required Fundraising Disclosure Statements

    Usher 1F Collaborative is a charitable organization exempt from taxation under section 501(c)(3) of the Internal Revenue Code, and as such, we are required to include certain disclosure language on all printed solicitations.

    Financial and other information about Usher 1F Collaborative's purpose, programs and activities can be obtained by contacting Melissa Chaikof at 321 Walnut St., #228, Newtonville, MA 02460-1927, 339.221.2743, or as stated below. 

    Colorado - Colorado residents may obtain copies of registration and financial documents from the office of the Secretary of State, (303) 894-2680, http://www.sos.state.co.us/, re: Reg. No. 20213015170. 

    Florida - A COPY OF THE LATEST FINANCIAL REPORT, REGISTRATION FILED BY THIS ORGANIZATION AND A DESCRIPTION OF OUR PROGRAMS AND ACTIVITIES MAY BE OBTAINED BY CONTACTING US AT: USHER 1F COLLABORATIVE, 321 WALNUT STREET, #228, NEWTONVILLE, MA 02460. IF YOU ARE A RESIDENT OF ONE OF THE FOLLOWING STATES, YOU MAY OBTAIN FINANCIAL INFORMATION DIRECTLY FROM THE STATE AGENCY. FL REG. #CH51961

    Georgia – A full and fair description of our programs and our financial statement summary is available upon request at our office and phone number indicated above. 

    Illinois - Contracts and reports regarding Usher 1F Collaborative are on file with the Illinois Attorney General. 

    Maryland - For the cost of postage and copying, documents and information filed under the Maryland charitable organizations laws can be obtained from the Secretary of State, Charitable Division, State House, Annapolis, MD 21401, (800) 825-4510.

    Michigan - Charities registration #63607

    New Jersey – INFORMATION FILED WITH THE ATTORNEY GENERAL CONCERNING THIS CHARITABLE SOLICITATION AND THE PERCENTAGE OF CONTRIBUTIONS RECEIVED BY THE CHARITY DURING THE LAST REPORTING PERIOD THAT WERE DEDICATED TO THE CHARITABLE PURPOSE MAY BE OBTAINED FOR THE ATTORNEY GENERAL OF THE STATE OF NEW JERSEY BY CALLING 973-504-6215 AND IS AVAILABLE ON THE INTERNET AT: http://www.state.nj.us/lps/ca/charfrm.html. REGISTRATION WITH THE ATTORNEY GENERAL DOES NOT IMPLY ENDORSEMENT. 

    New York – Upon request, from the Attorney General’s Charities Bureau, 28 Liberty Street, New York, NY 10005, 1-212-416-8686 or www.charitiesnys.com

    North Carolina -Financial information about this organization and a copy of its license are available from the State Solicitation Licensing Branch at 1-919-814-5400. This is not an endorsement by the state.

    Pennsylvania – The official registration and financial information of Usher 1F Collaborative may be obtained from the Pennsylvania Department of State by calling toll-free, within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.

    Virginia - Financial statements are available from the State Office of Consumer Affairs, PO. Box 1163, Richmond, VA 23218. 

    Washington - The notice of solicitation required by the Charitable Solicitation Act is on file with the Washington Secretary of State, and information relating to financial affairs of Usher 1F Collaborative is available from the Secretary of State, and the toll-free number for Washington residents: 1-800-332-4483 or https://www.sos.wa.gov/charities/. 

    Wisconsin—A financial statement of the charitable organization disclosing assets, liabilities, fund balances, revenue and expenses for the preceding fiscal year will be provided to any person upon request.

© Usher 1F Collaborative 2025

Crafted by Firespring

© Usher 1F Collaborative 2025

Crafted by Firespring
  • About Us
    • Our Story, Mission & Vision
    • What Is Usher Syndrome?
    • Who Are We?
    • Our Ten-Year Journey
    • Resources and Partnerships
    • Financials
    • Contact Us
  • The Research
    • Usher 1F Research Network
    • Areas of Focus
    • RUSH1F - Usher 1F Natural History Study
  • Usher 1F Stories
  • News & Events
    • Usher 1F Collaborative News
    • Usher 1F Collaborative Media Coverage
    • Newsletters
    • Relevant Research in the News
    • Event Calendar
    • Past Conferences
  • Take Action
    • Donate
    • Become a Luminary Donor
    • Volunteer
    • Get Connected
    • Get Genetic Testing
    • Laurie and Gary Shapiro Memorial Fund
    • Fundraising Toolkit
  • Donate
  • SEEING FORWARD
    • SEEING FORWARD
    • Seeing Forward brochure
  • USHER 1F CANADA
    • Usher 1F Collaborative Canada
    • Illuminating the Future
    • Catch The Ace
    • Usher 1F Collaborative Canada Board
    • Usher 1F Canada Stories
    • Donate - Canada
    • Contact us
  • Get Involved
  • Donate Now
  • Upcoming Events
  • Get Our Newsletter
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