Disclaimer & Privacy Notice – Fatty Oxidation Disorders Family Support Group

All rights reserved. All text, logos, graphics, designs and other content on this site, are the property of Deb Lee Gould and FODSupport.org. This is the only official FOD Family Support Group (FOD Group) website and Email/facebook Group and Lists. Permission to copy, use and distribute information (but not graphics) on this site, in whole or in part, for non-commercial use and without fee in order to educate and create awareness, is hereby granted, provided that this copyright, permission notice and appropriate credit to the FOD Family Support Group and The FOD Communication Network be included in all copies.

There is one exception to the copyright permissions ~ please refer to the Coping and Healing page and the ‘Permission to Reprint’ conditions at the end of the article titled Deb’s Personal Perspective on Parental Grief and ‘Healing.’ Please contact Deb for permission to reprint.

However, if one chooses to design or start their own webpage, email list, facebook etc page please note that one cannot use any part of the FOD Group’s name, ‘motto’ or design logo in promoting that site. These are copyrighted and trademarked names and designs. The FOD Group also has purchased some graphics from companies that have given us permission to use on our site only, so one cannot copy our graphics and use for their own purposes.

Also note that as of Dec ’08, the FOD Group/Deb created a facebook Group and Cause page which is mainly to advocate FODs and create awareness around the world – Deb’s page [search facebook for Deb Lee Gould] is not a personal page – it is for professional purposes only and for info on the Group and her Grief Consulting services. This disclaimer is in effect for those pages as well.

•• Deb and/or the FOD Group will not compromise the integrity or reputation of the FOD Group by engaging with individuals or organizations that participate in any form of personal or public cyber-bullying, verbally attacking other individuals or organizations, or what we deem as unethical behavior. We strive to maintain respectful and professional behavior via our personal and public online presence. ••

The opinions and information provided here are not necessarily those of the author or anyone associated with the FOD Family Support Group, and are presented for informational and educational purposes only. The author or the FOD Family Support Group, accepts no responsibility for content, accuracy or use.

•The reader of any information on this website, as well as on the FOD Email List, facebook Group, or from private emails/phone/video conversations or grief consults with Deb (FOD Director), is responsible for how he/she perceives and utilizes it.This disclaimer also applies to the videos we have on our site and on facebook/youtube. I (Deb) make it very clear via email/phone/website/face-to-face that I (Deb) am NOT a medical or licensed professional, so I do NOT offer medical advice – just my own Family and professional experiences and experiences others have shared with me over the years (no names are divulged unless I have email/written/verbal permission to do so).***Additionally, in regard to my Grief Consulting practice [www.bereavedparent.com], I am not working as a licensed mental health counselor treating individuals as patients and with specialized psychological treatments (ie., EMDR for PTSD) – I am working as a grief and spiritual support resource only, and as a legally ordained (non-denominational) minister/spiritual counselor. My relationship with bereaved parents and others is one of respectful and reflective listening, sharing and offering suggestions and strategies based on my own personal and graduate/professional training and experiences. If medical/mental health treatment is needed beyond what I offer as grief support, I offer referrals to local professionals, and then it will be the responsibility of the individual to seek that further medical/mental health help. All consults are confidential – however, in emergency situations, if I perceive there to be a danger to self or another, I will contact 911 and/or another 3rd party. Anyone that chooses to send/receive emails or forms to/from me (Deb) is aware that my email messages are highly encrypted via google business apps secure server, but they are not HIPPA compliant, since I am not a mental health provider and a HIPPA covered entity sending information to insurance companies etc – HIPPA regulations do not apply. However, I still abide by the ethics of privacy and confidentiality. My emails are only sent to my clients and no one else. So please be aware that even though I keep your information confidential, they are still on my laptop and on your laptop/phone and there is always that possibility they may be accessed (ie., especially if the items are stolen/lost). You do have the choice of printing off forms and bringing them to your appointment If you are uncomfortable sending email/forms. You may also request phone/zoom consults or face-to-face meetings rather than seeking support via email correspondence.

Deb and Mary (our webmaster) respect the privacy of visitors to our site. In order for us to keep track of the number of new FOD Families and interested FOD Professionals, we do keep site statistics and also ask that those wishing to participate on our google Email List or closed facebook Group to ‘Join the Group.’ Since the List/Group is only open to FOD Families (and familymembers) and Professionals we collect a variety of information in order to determine if the person is allowed to join [we will soon have an expanded Family Questionnaire]. None of this information is shared with any other Family unless I have written permission and/or an email from the Family wishing to share that info with other FOD Families for networking purposes. The membership listing of our google Group members is not available to all on the List – just Deb, Mary and another FOD dad that monitors the List when I am away have access to the full List. Our server for both the FOD site and bereavedparent.com is a secure server that is encrypted.We do not sell to or share any information with third parties and we are not responsible for 3rd party (or links on our site) privacy policies. If anyone has any concerns about the privacy policy on our site please email Deb or Mary (Contact Us).

E-mails from Deb (or Mary) and any attachments are intended for the sole use of the addressee listed. It may contain confidential or proprietary information. The recipient is obligated to maintain it in a safe, secure and confidential manner. Unauthorized redisclosure or failure to maintain confidentiality may subject you to federal and state penalties. If you are not the intended recipient, please be aware that any review, use, dissemination, distribution, downloading, or copying of this communication, in whole or in part, is strictly prohibited and may be unlawful. Please note that e-mails are susceptible to change after transmission. Any personal information shared with Deb (‘Join our Group’ etc) is not shared with anyone else unless you give email, verbal, or written permission to Deb to share that information.

Proper Use – Upon visiting this Website, you agree not to use the site or any content of the site for any illegal or improper purpose, or to transmit to or through the site any illegal, harmful, threatening, obscene, hateful or other objectionable material of any kind. As for Photos on our site, in our Newsletters or facebook page – even though we have obtained either written and/or verbal permission from Families to post pictures and/or names that have been freely sent to us, we are not responsible for and cannot protect against the potential use of the photos outside our online community sites/publications (because someone copies it and distributes it elsewhere).

The FOD Family Support Group or any of its volunteers will not be held liable for how this information is perceived or utilized. Readers should consult with medical, mental health or legal professionals for advice on specific issues.

Please also be aware that if you translate any or all of this website into another language using the translator program on our site, that the content’s meaning may be distorted or changed ~ so be sure to have a physician etc read over the material and/or consult with someone to clarify the content.Please also note that organization/support group links posted on our site are for informational purposes as well ~ they are not a blanket endorsement by the FOD Family Support Group or Deb Lee Gould, MEd of that organization.

Regarding Advocacy issues ~ our members’ support for these issues is on an individual basis and is not an endorsement of organizations (or their policies/actions) that are linked on our site. If you, as an FOD member, choose to help with various groups advocating expanding NBS, formula legislation, and other related issues, please remember that you are acting as an individual and not as the designated spokesperson or representative for the FOD Family Support Group.Please also note that if you (FOD Family) choose to do an FOD Awareness project on your own for the benefit of the FOD Family Support Group, the FOD Family Support Group will not have any financial or legal etc responsibilities for any outside event you may plan. By signing the ‘Family Project for FOD Awareness Agreement Form’ (which is on the ‘Online Forms’ page), you understand that you are fully responsible for your own awareness project and that only you will receive the tax-deduction if you send your US check made out to the ‘FOD Family Support Group’ to Deb’s address.

The FOD Family Support Group is an all volunteer Family-based Support Group and as of Jan 1, 2007 we are officially a 501c3 Non-Profit corporation. All US donations are tax-deductible!

Our Federal Tax ID # is 83-0471342.

Thank you to all that have helped us over the years (gifts were not tax deductible prior to Jan 1, 2007 when we finally became a tax-exempt 501c3 nonprofit) so that we may continue to provide our support and information to Families and interested professionals free of charge. Your generosity helps to cover copying and postage costs, webpage fees, phone calls to new FOD Families (US and abroad), Deb’s probono Grief Support community outreach, MeetUps/Conference costs, as well as raising funds to train new FOD Clinical professionals and for FOD Research ~ we have no paid staff so funds are not used for administrative salaries. THANK YOU from ALL of us!

Please Note: We do NOT email ANY mass solicitations for support so if you receive an email that looks like it came from me (Deb), do NOT respond! We also do NOT make any mass phone solicitations ~ so please do not respond to someone claiming to be calling on behalf of the FOD Group!

NEVER make any changes to your child’s (or your own) treatment without first consulting with his/her/your doctor(s). DO NOT make any changes in treatment (medical, nutritional, behavioral, emotional, etc) based solely on what is read on this site, in the FOD Email List Archives, or discussed via phone/email conversations with other FOD Families, or with Deb. Always consult with your child’s/your Drs and specialists BEFORE any changes are considered.