Welcome to Hope for HIE!
Whether you have a newly diagnosed child, or are finding our comprehensive support network for the first time in your journey, we want to welcome you to a place where there is hope in each story, no matter what outcome you may be facing.
Hope for HIE History
The Hope for HIE Foundation is a US-based 501(c)3 non-profit organization serving families worldwide. What began in 2010 as a forum focused on connecting parents, became a nonprofit foundation in 2014, reaching and supporting thousands of families a year. The foundation also focuses heavily on generating awareness, partnering with clinicians to improve understanding and familial relationships, support research, and the ultimate goals of decreasing incidence and increasing opportunities for children with HIE to reach their individual potentials.
Hope for HIE Support Network & Culture
Hope for HIE supports over 100 groups on Facebook that are topic and location-based, with our Main Parent Forum serving as the “hub” connecting parents and caregivers of HIE children. These groups are administered by a team of over 75 moderators and administrators who work cohesively to build and maintain levels of support aligned with Hope for HIE's Community Standards & Guidelines.
A comprehensive list of our subgroups can be found at Facebook.com/hopeforhie/groups.
The Hope for HIE culture centers around the experience of connecting with others and revolves around certain core values:
- Advocacy - We will actively advocate for our children and fellow families. We will relentlessly pursue a world where HIE families can fully realize their potential.
- Empathy - All families and children who experience HIE deserve empathy for the path they are on, no matter the outcome.
- Integrity - We will be who we say we are, work together honestly and direct ourselves toward building the organization for the greater good.
- Unity - We will be open and honest with each other. We realize we are stronger together and group needs are stronger than individual agendas.
- Reflection - We will carefully analyze all decisions that are made and adjust the scope or expectations in order to best benefit the HIE community at large.
Membership & Accountability
With over 10 years of experience building our community, balancing the diversity of our membership, including the causes, outcomes and backgrounds of each HIE child’s situation, we have grown a culture that strives to be inclusive, helpful, and educational. Membership in Hope for HIE’s community is a two-way relationship. We expect members to read, understand, and adhere to our Community Standards & Guidelines, and we expect our admin and moderator team to uphold the Community Standards & Guidelines.
Hope for HIE's support is geared first and foremost to parents of children who have been diagnosed with HIE, regardless of severity or outcome. Extended family must be added into the main forum by parents first, and some parents may choose not to add in any. We offer a subgroup specifically for extended family members.
Please note: Facebook profiles on behalf of a child will not be added in - parents profiles must request. We work hard to ensure this is a safe place for all.
Newly Diagnosed Families
We recognize and understand the grief, trauma and difficulties our new families are facing. We have a New to HIE subgroup set up specifically to provide more in-depth support and help families with the immense learning curve that comes with HIE. We highly recommend families join the New to HIE group in addition to the main forum for a specialized place of support.
Current Moderators & Admins:
Karissa Shepherd, Betsy Pilon, Lindsay Vanzandt, Clarissa Stuckenburg, Jennifer Kegyes (Jennifer is also the foundation Family Outreach chair, and can be reached by email at firstname.lastname@example.org)
Families are here to: Seek support and Give support
Our community is intended for people to be actively engaged in support. We define support as giving personal experience to a situation, giving positive moral support and connecting participants to each other who have shared similar experiences to learn from one another.
We respect that each family has their own dynamic, outcome and journey to travel, and expect our families to have respect, empathy, tact and curiosity for others journeys, to build the positive experience we all wish to maintain.
Main Group Structure & House Rules
We heavily utilize our pinned posts to help keep the flow of information steady in the main discussion threads. This allows the main feed to be focused on families asking questions and needing direct support.
All of the following came about based on community feedback and as a participant, it is your responsibility to be aware and utilize the following:
- Weekly Mentions - Each Monday, a thread is started for CELEBRATION posts. This is the spot to post pictures and talk about inchstones, milestones, new equipment that's working, therapies, happy moments you want to share with the group. Photos and videos may be posted freely! This is also a place you can post personal fundraising efforts for your child (not for overall living expenses since we are all in the same boat) and any contests your child has been entered in (once per week).
- Member Marketplace - We have created a subgroup for families to post equipment/supplies they may be selling, items that our members may have made that would benefit our families, etc. Click here to join.
- Friday Photo Bomb - Each Friday a thread is started for fun to show the faces of our beautiful children. This is not the same place to post celebrations, but rather just simply a place to ensure everyone can appreciate how wonderful each of our children are.
- Birthday Celebrations - Birthdays are a big deal, filled with big emotions for our parents. Feel free to share in the main feed about your child's birthday!
- Reflections - Reflections about the journey with HIE are always welcomed in the main feed, as long as they are within the scope of the community guidelines.
- Videos Asking for Diagnoses, Interpretation, etc. - We are a peer-to-peer support forum, and are not medical professionals. If you believe your child is seizing, or has Infantile Spasms, which are a medical emergency, please seek medical treatment ASAP and send your video to your medical team.
- Admin Reminders - Occasionally, the admin team will post a topic for the membership to take note of. These are just a way to keep communication lines open to keeping the place a safe, positive place to be.
Group Housekeeping & Facebook Tools
We have built out several how-to videos in our UNITS section that will teach you how to use Facebook’s tools to maximize your experience in the groups. Please take a look!
- Admin Post Clean Up - Our admin team is tasked with keeping our main feed open for support. If posts are made to the main feed that should be made in our dedicated threads, or have been posted several times, they will be removed and the member notified of where they should be posted or where the other posts have been made.
- Searching Past Posts - The forums present a trove of information from previous discussions. Please use the SEARCH function, topic tags, etc. for a specific topic before you post asking on a new topic.
- Bumping - If you do not get an answer to a question in 24 hours, you may “bump” up a post, once per 24 hours. Sometimes people may not have the experience to share on a specific topic, and we know it can be difficult to wait for an answer, but consistently bumping posts detracts from the flow of information.
- Following - Commenting that you are “following” a post, without giving additional insight or support, detracts from supporting the original poster. Facebook has a feature to "turn on notifications for this post" that can be accessed by tapping the downward arrow and selecting that option on any post. Any comments of "following", "f", "*", etc. will be removed.
- Pictures with Posts - Pictures are always welcomed along with on topic posts. Calling out a "picture for attention" isn't necessary as no post is more important than another to call attention to.
We have a number of subgroups providing specialized support for a variety of topics that work better in a subgroup format. Each group operates under the same Community Standards & Guidelines as the rest of Hope for HIE's network. However, the discussion is focused on the sub-group topic.
Each group has a dedicated team of admins who are experienced in the topic at hand. Additional "house rules" may be in place, depending on the subgroup.
If there is a sub-group that does not exist for your area or need, please contact email@example.com, or one of the Main Forum Admins to discuss creating it.
INTERACTING IN OUR COMMUNITY & SOCIAL MEDIA
Exchange of Information
Because our support network is focused on a health-related diagnosis, sharing quality, vetted information is of utmost importance and something we take very seriously in order to ensure people gain an accurate understanding of HIE, and are able to share more accurate information in their own personal advocacy and awareness initiatives.
In the era of misinformation on the internet, here's a helpful graphic to help our families learn what is considered credible information:
Sharing Personal Experience & Expressing Concerns
Sharing personal experience is very different than sharing medical advice and medical information. Any information that directly conflicts with vetted, accurate medical information on HIE and related conditions will be removed. If you do not have personal experience to share, please watch what information you share and ensure it is accurate. Inaccurate information will be removed.
We have a variety of outcomes. All concerns are valid and welcomed to be shared, no matter what the concern is, across all outcomes. Invalidating others concerns is not aligned with the culture of Hope for HIE, and everyone should feel comfortable expressing whatever concern they may have. HIE comes with a lot of baggage to unpackage, and we are here to help you sort through it in a constructive manner.
Tact and Sensitivity
Tact and sensitivity is required from our membership, across all outcomes. While there is not a clear cut definition, keeping in mind you are posting to a forum that contains all HIE causes and outcomes should be well thought of prior to posting or commenting. Certain phrases that are used for “flair” instead of fact should be avoided (such as stillborn, born dead, etc. unless they actually did pass away), remembering the full breadth of outcomes we have represented.
Staying on Topic
The common thing that brings us together here is our HIE experience, and that’s what we’re here to discuss. Please stay on topic about HIE, and the specific topic at hand. This includes all the ways that HIE affects your lives, so it’s far from restrictive.
Posts & Screenshots from Outside our Network
Bringing in questions/posts from others who are not a part of our network and do not have a connection with HIE is prohibited, as it takes focus away from our engaged HIE families. The same goes for bringing in screenshots, drama from other groups, or posts outside of Hope for HIE. While we do encourage advocacy, we deeply discourage online mob mentality.
Posting with Dignity and Respect
We recognize that there are many instances of sharing the real and raw parts of our journey together. We also recognize that each of us as parents have a duty to protect our children, and promote representing those with disabilities with dignity and respect.
Photos and videos posted by caregivers, parents, etc. throughout social media that show private body parts, do not promote a dignified essence of the person represented (people laying in their own feces, excrement, bodily fluids, screaming relentlessly in excruciating pain, seizing, etc.) are under legal scrutiny. Photos and videos of this nature will be removed immediately.
Religion and Politics
Both topics are about as individual as each child's HIE outcome. We are a worldwide group, many who practice religion and many who do not, many who have specific political views, and many who do not. Please avoid projecting your religion or lack thereof on others, and your political beliefs, or lack thereof on others. Asking for prayers or telling someone you will pray for them is totally appropriate, and generally well received. Telling someone they aren't praying hard enough for their child is not. Saying that because you prayed or practice a particular faith, you had a better outcome, or was the reason your child had a different outcome than others is also not appropriate. Extending unhelpful platitudes such as "God only gives you what you can handle" are also not welcomed.
We are a worldwide community and have people who are in a spectrum of life circumstances. Bashing other countries medical, insurance programs and services, cultural practices and differences, projecting self-righteousness over another due to socioeconomic, cultural, or other worldly condition won't be tolerated.
Treatment & Medical Choices
Each member is doing their personal best to advocate and treat their child the best they can, finding what works for their individual situation. What works for one, may not work for another, so please be sensitive in giving advice. It's the difference between "this didn't work for us" and "you're stupid for trying this with your kid".
Implying your choices, religion, etc. are the sole reason for your child's outcome and projecting that upon others who make different choices comes off as self-righteous and is not supportive to others.
Lastly, a common notion of support that is very touchy in our community when community members who are struggling with end of life or palliative decisions is telling parents to NEVER GIVE UP. While the spirit of support is genuine, we also have been told many times from our families who face these decisions that it exacerbates their hurt and pain when hearing this phrase. Sometimes the outcome does not end up the way we expected and making statements like this can leave families with a poor outcome in a cloud of doubt...when doubt and guilt are already the some of the heaviest burdens of grief before others’ comments and opinions add to the weight. Instead, consider affirming their difficulty and encouraging them that whatever decisions are made, they will be the right one for their child and family. We center on "any decision made with love is the right one" in these situations.
Any space in social media should not be considered "closed" or "private", especially in regards to potential litigation. Engaging in discussions regarding potential litigation in social media can be subpoenaed and potentially jeopardize a legal case. Due to our commitment to protect our families and the foundation, we do not allow discussions to take place about litigation details, lawyer recommendations, etc. Posts that are regarding litigation details, seeking to get legal advice or recommendations, and comments attempting to give legal advice or recommendations, will be removed.
Please utilize your legal contact or refer to Facebook's Terms of Service for more guidance.
Inaccurate Language & Perpetuating Stigmas with Disability
We have a full range of outcomes and communicating with tact and sensitivity comes with using accurate terminology and word choice that is appropriate. A child that lives was not “stillborn” or “born dead”. Please avoid using these phrases unless your child was actually a stillbirth or a loss.
Likewise, we work to reduce the negative stigma behind disabilities. Think before posting how it appears to someone with a different outcome than yours. Verbiage that is deemed inaccurate or lacking tact and sensitivity will be flagged and removed.
Vaccination posts are not allowed. Please work with your medical team to determine the best course of action for your child’s health. All posts, comments, etc. regarding vaccinations will be removed. Continued belaboring, attacking admins, etc. on this issue will see members muted and/or removed permanently from our network.
Practicing Empathy & Supporting One Another Across All Outcomes
Outcomes are a natural topic in our community, but they are not the focus of our community, because we know that creates strife and division among our families. Due to the nature of social media, please be extra aware to avoid utilizing verbiage:
- That insinuates one outcome is superior to another, as this can be seen as furthering stigma against people with disabilities
- Commenting or insinuating parents aren't trying hard enough to help their child
- Aggressively judging others parenting choices
- Being dismissive of others feelings by projecting your own grief and partaking in "Suffering Olympics" (“be thankful your child does xyz”, etc)
- Posting commentary that is seen as pity. This further stigmatizes our children.
- In addition, if you have no personal experience on a topic, please refrain from personal comments that are against the spirit of support.
We HIGHLY ENCOURAGE families to take the leap to learn from each other across all outcomes, to appreciate the joy and love that each child brings, and to avoid pity, bragging and shortsighted commentary that divides the group. Divisive, inaccurate, stigmatizing posts/comments will either have comments turned off or be removed, at the discretion of the admins.
We promote a culture where HOPE IS IN THE JOURNEY, NOT THE OUTCOME.
Sharing Group Posts & Information
Please be aware that our network groups are closed. Everything said and posted here is intended to remain here and go no further. People here share their deepest feelings, fears and thoughts, often sharing information they would not elsewhere. Unless with the expressed permission of individual members, no material posted here is to be shared elsewhere for any reason, including lifting photos, screenshots of conversations, copying and pasting, etc. Doing so will result in immediate removal from the group. Discussing other people's children is something that should begin with the parent of that child.
Personal attacks & Fear Mongering
Personal attacks on members or admins will not be tolerated, and will be deleted at the discretion of the administrators. This is not to say you can’t disagree, or express your opinion - it is to say that stating things in a respectful manner, even with disagreements, is required, as is keeping on topic and sharing personal experiences. Providing additional information on a subject or more clarification to a topic when presented in a respectful manner is not a personal attack.
Posts that are flagged by members or admins for fear-mongering may be removed at the discretion of the admins. Continued efforts to spread misinformation or fear monger may result in muting or removal of the member.
There is no need to repeat the same point multiple times, nor any need to post about the same topic over and over again, expecting different responses. Badgering or belaboring posts and/or will be deleted, or an entire thread will have comments turned off. Badgering, belittling or attacking moderators and admins because they have enforced the community guidelines and standards will also not be tolerated.
Blocking Members & Admins
You can block anyone on Facebook, and if you do so, you’ll see no further posts or comments from them, and they will no longer be able to see anything you post. If you find that a group member routinely posts opinions or information that bring out negative feelings in yourself, it is your responsibility to block them to avoid conflict rather than reacting to everything they say. If this becomes a chronic issue, you will be asked to either stop commenting, or remove yourself from the group.
Blocking admins is not allowed. Should you block an admin, you will be removed from our network.
Soliciting Group Members
By being a member of the Hope for HIE forums, you agree to not spam or solicit our membership individually through personal messages, in person Hope for HIE events, promoting business ventures, etc. and contain promoting personal businesses or fundraisers to the weekly MEMBER MARKETPLACE subgroup.
Harvesting members from our group for other groups is also not allowed and posts will be removed, and you may either be placed on a break or removed, depending on the severity.
For our full non-solicitation policy, please click here.
Violating Our Guidelines
We are deeply committed to providing an inclusive, positive experience for families in our support network. Instances of personal attacks or violating these guidelines will see you muted for a period of time, or removed from our networks permanently, as determined by the admin team.
Message an Admin/Moderator if You have a Concern
Please report any content you feel violates our community guidelines through Facebook's reporting tool. Rather than spreading drama through the group OR bottling up your feelings until you can’t keep quiet anymore, please consider contacting a group admin to talk about how you feel in private - or alternately, contact any person whose comments have bothered you directly for a civil conversation.
Remember that there are other options
Everyone's journey is an individual one, and we wish you the best finding the spot you feel most comfortable expressing your journey. If you are not comfortable with these Community Standards and Guidelines, we wish you well and hope you find a place that you are comfortable with.
Families who choose to leave the group for their own reasons are always welcome back if they feel ready to return. However, if you have been removed for the group by the admin team, cultivated unnecessary drama upon your exit (known as flouncing), or other extreme circumstance, you will not be welcomed back.
Legal Disclaimer: Hope for HIE's organization and its admins highly suggest families treat this group as an extension of an open internet, in regards to legal matters. While we are careful to screen incoming members for their connection to HIE, adding in only parents and immediate family of their choosing, Facebook has its own terms and conditions for data storing and any material asked for during a discovery process for any legal matters is out of our hands. Deleting previous posts will not delete them permanently from Facebook's cache. We remind members to be mindful of the information posted, as always.
Medical Disclaimer: Hope for HIE's forum contains posts on many medical topics; however, there is absolutely no assurance that any statement contained or cited in a comment touching on medical matters is true, correct, precise, or up-to-date. Even if a statement made about medicine is accurate, it may not apply to you or your child. The medical information on the forum cannot substitute for the advice of a medical professional (for instance, a qualified doctor/physician, nurse, pharmacist, etc.). None of the individual contributors or administrators of the forum can take any responsibility for the results or consequences of any attempt to use or adopt any of the information presented on this group.
Hope for HIE Trademark, Entity & Graphic Usage: Hope for HIE is a legal, nonprofit organization that is protected under international trademark and copyright laws for the content, graphics, and designated themes that we produce for public consumption. Our logo, artwork, graphics, awareness campaign artwork and themes, etc. are not to be reproduced, altered (also known as creating "inspired by" designs), or taken outside of the context in which we allow sharing without the permission of the foundation. We partner regularly with small businesses who become contracted, approved vendors to use elements or the entirety of our designs, themes, logo, etc. on products, and would welcome you to reach out to firstname.lastname@example.org to discuss setting something up.