We C.A.R.E. Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support

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Supporting Compassion for families, Awareness, Research, and Education.


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MLD Foundation's web site, its databases, and the contents thereof are copyrighted by MLD Foundation, all rights reserved. No part of the web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial or nonprofit purposes without the express written permission of MLD Foundation.

Permission is hereby granted to print paper copies of the information you find here for your personal use such as to share with your loved one's care team or education support members, provided that such content is in no way modified, and the credit for the source (MLD Foundation) and MLD Foundation's copyright notice are included on the printed copy (the automatically appear on the footer of every web site page). Any other electronic reproduction or other printed versions is strictly prohibited.

You can learn more about copyrights and the Internet here.

(c) 2000-2024 MLD Foundation


Linking to a MLDfoundation.org web page is perfectly fine. Some pages have a bookmark (anchor) for key elements –  you may also link to those anchors to aid the reader.

An iframe or equivalent display of a MLD Foundation web page may be made on your web page as long as a page is shown in its entirety and no attempt is made to remove MLD Foundation graphics, navigation, or ownership identity. No direct linking to pictures and other individual elements is permitted without advance written permission.

Use of small portions, a sentence or two, of the content of this site may be made without advance notice as long as attribution is made to MLD Foundation. If the use is on another web site an acknowledgment and an active link back to the appropriate page at https://mldfoundation.org is required.

To maintain reference/link and bookmark integrity we try not to change the names of files used for each of our web pages, however we cannot guarantee that they will never change.


The following are trademarks of MLD Foundation:

MLD Foundation MLD Family
Faces of MLD MLD Family Conference
We C.A.R.E. MLD Family Gathering
MLD Family Compassion Fund MLD Family Profile
MLD Patient Registry MLD Patient Powered Registry
MLD Conversations MLD Minute
MLD Family Discussion List  
The "We C.A.R.E." phrase and tag-line "facilitating Compassion, increasing Awareness, influencing Research and promoting Education"
The stylized MLD Foundation text with the intertwined butterfly, the standalone butterfly Logo with distinct butterfly graphic of faces in the wings (with or without the extended looped "swoosh"), the stylized MLD Newborn Screening text with genomic newborn screening foot, and the standalone MLD newborn screening foot with embeded genomics and heart blood spot.
click images to enlarge

These logos and trademarks are not to be used for any purpose, private or public, including fundraising for MLD Foundation or any other cause, without the express advance permission of MLD Foundation.

We are occasionally asked if the logo can be reproduced in some form for fundraising, tatoos, personal projects, or other purposes. Permission must be requested in writing, in advance, and may or may not be granted after careful consideration of how the logo is proposed to be used. More details can be found here. If the proposal includes selling an item with some embodiment of the logo as a fund raiser, the details of the fund-raiser should also be provided, including any representations as to the tax deductibility of contributions and how MLD Foundation will be connected to the logo use.

If permission is granted, the Trademark "tm" mark must be used alongside the logo or graphic.

Details about how these marks are protected can be found here (see the first two paragraphs under "Trademark Registration".


MLD Foundation does not advocate, support, or practice unlawful discrimination based on age, ethnicity, gender, national origin, disability, race, size, religion, sexual orientation, or socioeconomic background.

We reserve the right to limit access to resources to any person(s) not respecting the values, decisions, ethics, or privacy of others.


Guidestar and the Sarbanes-Oxley Act require this policy ... If any employee, volunteer, or affiliate [person] of MLD Foundation reasonably believes that some policy, practice, or activity of MLD Foundation is in violation of law, a written complaint must be filed by that person with the Executive Director or the Board President. It is the intent of MLD Foundation to adhere to all laws and regulations that apply to the organization and the underlying purpose of this policy is to support the organization’s goal of legal compliance. The support of all persons is necessary to achieving compliance with various laws and regulations. A person is protected from retaliation only if the person brings the alleged unlawful activity, policy, or practice to the attention of MLD Foundation and provides MLD Foundation with a reasonable opportunity to investigate and correct the alleged unlawful activity. The protection described below is only available to persons that comply with this requirement. MLD Foundation will not retaliate against a person who in good faith, has made a protest or raised a complaint against some practice of MLD Foundation, or of another individual or entity with whom MLD Foundation has a business relationship, on the basis of a reasonable belief that the practice is in violation of law, or a clear mandate of public policy. MLD Foundation will not retaliate against persons who disclose or threaten to disclose to a supervisor or a public body, any activity, policy, or practice of MLD Foundation that the employee reasonably believes is in violation of a law, or a rule, or regulation mandated pursuant to law or is in violation of a clear mandate of public policy concerning the health, safety, welfare, or protection of the environment.


Guidestar and the Sarbanes-Oxley Act require this policy ... MLD Foundation acknowledges its responsibility to preserve information relating to litigation, audits and investigations. The Sarbanes-Oxley Act of July 30, 2002, makes it a crime to alter, cover up, falsify, or destroy any document to prevent its use in an official proceeding. Failure on the part of employees, volunteers, or affiliates to follow this policy can result in possible civil and criminal sanctions against MLD Foundation and its employees and possible disciplinary action against responsible individuals (up to and including termination of employment). Each employee has an obligation to contact the Chair of the Audit and Finance Committee, Executive Director or the Board President of a potential or actual litigation, external audit, investigation or similar proceeding involving MLD Foundation that may have an impact as well on the approved records retention schedule.

Most documents will be archived electronically with reasonable efforts to back up these archives. Giving records, federal and state tax & corporate documents will be retained at least as long as statutes require. Giving records will be archived in a similar fashion, however, while we normally use a 3rd party merchant processing service to avoid any contact with credit card numbers we occasionally process manual transactions in which case records or the transaction are retained but the credit card number is disposed of (deleted or shredded) as soon as practical and is not archived. The occasional credit card number sent by email may be inadvertently backed up as part of our email archives.


Compliance with PayPal's Acceptable Use Policy when using their services for payment and donation processing are acknowledged herein by reference.

Donations and purchases are by rule not refundable, however, in the case of administrative error please contact us to request an adjustment or refund. Donations generally are tax deductible, your receipt and/or the context in which the donation was made will determine the deductibility. Purchases are usually partially deductible for the donation made in excess of the value of the item purchased and will be indicated as such on your receipt. Always check with your accountant or tax advisor for accurate advice.

Re-occurring/scheduled donations will generally not be scheduled for a period longer than 1 year, after which they must be renewed.

Donations and payments made by PayPal, Google, and Square are processed by 3rd parties. When using these 3rd parties, MLD Foundation never sees, captures or stores your personal credit card or banking information.


revised September 2020 ... added MLD Minute and MLD Family Discussion List as trademarks. Added paragraph about trademark protection. Added two MLD Newborn Screening logos which have been in use since April 2020. Updated MLD standalone butterfly image and description to include both for with or without the looped "swoosh".

revised October 2016 ... slight modifications and clarification to Trademark usage.

revised November 2015 ... added MLD Conversations to trademarks (accidental historical omission). Added text about retaining "tm" when using (with advance permission) the logo or butterfly graphic.

revised August 2015 ... added MLD Family Profile to trademarks (accidental historical omission), and new ... MLD Patient Powered Registry, and MLD Patient Registry trademarks.

revised January 2014 ... added some copyright clarifications, MLD Family Compassion Fund trademark and a reference.

revised April 14, 2013 ... corrected several spelling errors.

revised March 20, 2013 ... Added Online Donations & Payments, and Acceptable Use Policy when using PayPal as donation or payment processor.

revised May 28, 2010 ... added 2010 copyright, addition of graphics and slight modification to text describing the butterfly logo and MLD stylized text logo with butterfly, minor wording adjustment to pluralize the descriptive use sentence

prior revisions
: August 26th, 2009; May 26, 2009; July 2, 2008


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