We invite you to join us. Welcome to Our Online Communities.
There’s a Special Place for Parents & Families Touched by HPE, Their Allies and the Public
Families for HoPE supports more than 3,000 members of our online community for HPE families. More than 3,500 people follow Families for HoPE on social media. Our strong support community is at the heart of our mission: We empower, support, educate, encourage, and advocate for holoprosencephaly families.
As we continue to invite new families into the community of families touched by HPE, we are committed to making your online experience fully accessible, safe and supportive. To accomplish this goal we have designed and designated our private Facebook groups to meet the confidential communication needs of parents of a child with HPE and their various allies as follows:
Holoprosencephaly and Families for HoPE
This private Face Book group creates a special, exclusive community in which parents of a child diagnosed with holoprosencephaly can unite, receive support and give support to their peers. To ensure that parents are able to openly share their questions, needs, insights, fears, joys and hopes without judgement and restraint, we admit only parents of a child with HPE to this private group.
Families for HoPE
This is Families for HoPE’s public Face Book page for members of the extended family of parents of a child with HPE, teachers, healthcare providers and all other allies of a family touched by HPE.
Families for HoPE: Missing our kids!
Our private Face Book page for bereaved families provides support for parents of a child with HPE who is no longer with us. This is a safe space where ongoing remembrance of the beloved child is shared and where support of grieving parents and families is given and received.
While there are other Families for HoPE special audience and interests Face Book groups, we strive to maintain the integrity of the three primary groups mentioned above. Your help with appropriately steering friends, family members and other allies to the Families for HoPE public group is greatly appreciated. We will continue to work to create and maintain safe spaces across the Face Book platform for all to share the HoPE in holoprosencephaly.
Posted: October 3, 2024 by lyndot71
Families for HoPE – A Place for Everyone Touched by Holoprosencephaly
We invite you to join us. Welcome to Our Online Communities.
There’s a Special Place for Parents & Families Touched by HPE, Their Allies and the Public
Families for HoPE supports more than 3,000 members of our online community for HPE families. More than 3,500 people follow Families for HoPE on social media. Our strong support community is at the heart of our mission: We empower, support, educate, encourage, and advocate for holoprosencephaly families.
As we continue to invite new families into the community of families touched by HPE, we are committed to making your online experience fully accessible, safe and supportive. To accomplish this goal we have designed and designated our private Facebook groups to meet the confidential communication needs of parents of a child with HPE and their various allies as follows:
Holoprosencephaly and Families for HoPE
This private Face Book group creates a special, exclusive community in which parents of a child diagnosed with holoprosencephaly can unite, receive support and give support to their peers. To ensure that parents are able to openly share their questions, needs, insights, fears, joys and hopes without judgement and restraint, we admit only parents of a child with HPE to this private group.
Families for HoPE
This is Families for HoPE’s public Face Book page for members of the extended family of parents of a child with HPE, teachers, healthcare providers and all other allies of a family touched by HPE.
Families for HoPE: Missing our kids!
Our private Face Book page for bereaved families provides support for parents of a child with HPE who is no longer with us. This is a safe space where ongoing remembrance of the beloved child is shared and where support of grieving parents and families is given and received.
While there are other Families for HoPE special audience and interests Face Book groups, we strive to maintain the integrity of the three primary groups mentioned above. Your help with appropriately steering friends, family members and other allies to the Families for HoPE public group is greatly appreciated. We will continue to work to create and maintain safe spaces across the Face Book platform for all to share the HoPE in holoprosencephaly.
Posted: September 11, 2024 by lyndot71
Fall 2024 Newsletter
Please enjoy this autumn edition of HoPE News.
Posted: August 13, 2024 by Leslie, Sammy's mom
Virtual HPE Conference – Troubleshooting
Some users have reported difficulty accessing the virtual Webinar in Teams. Here are a few things that might help:
If you are using a mobile device, have you shut down and turned on your mobile device recently? Many of us can go for weeks without shutting down our phones. If you haven’t done that in a while, that might be a good place to begin.
If you are using a mobile device and you have the app, do you have the most-recent version of that app? If you don’t have your device set to automatically update your apps, maybe your app needs to be updated. Ever gone into your apps and see that little bubble indicating that your have 64 updates to make?!
If you are using a laptop, PC or Mac and trying to view in a browser, have you tried switching to a different browser? The recommended browsers are Microsoft Edge, Google Chrome or Mozilla Firefox. Another thing to ask yourself is whether you have the latest version of that browser. If you aren’t sure how to do that, ask a question in the browser such as “how do I know if my Chrome is up to date”, “how to I update my browser”, etc.
Have you tried clearing your browser cache and cookies before clicking the “Join Now” link. Cached data may sometimes interfere with the loading of the Teams webinar page.
If you have several apps or programs running, consider closing those and see if that helps your experience.
Are you behind a restrictive firewall or are using a network with limitations? Some corporate networks or security settings might block access to Teams features.
If all else fails, Families for HoPE will be sharing the recorded sessions on our website in the coming days. You won’t miss out.
Thank you for your patience.
Posted: August 12, 2024 by Leslie, Sammy's mom
Monday’s Agenda and Links
If you are using a mobile device (phone, tablet, etc.) to view the Conference on HPE, you will need to first download the Microsoft Teams app to that device. Once you download it, go back to your link and attempt to rejoin. Use the same email address that you used to register for the session.
If you are joining from a PC or laptop, you can simply join from a web browser (Microsoft Edge, Google Chrome or Mozilla Firefox).
MONDAY, AUGUST 12, 2024 – Morning Session REGISTER FOR THIS SESSION HERE
10:00am – 10:30am EDT
Welcome and Opening Remarks
Presented by Steve Harley and Susan Millender
10:30am – 11:30am EDT
Holoprosencephaly and the Carter Centers for Brain Research: Overview and history
Presented by Nancy Clegg, BSN, MSN, PhD, CCRP
11:30am – 12:30pm EDT
Medical Nutrition for Children with Developmental Disabilities: How to quantify adequate growth when your child doesn’t fit the standard growth charts
Presented by Janice Scott, MS, RD, CSP, LD
MONDAY, AUGUST 12, 2024 – Afternoon Session REGISTER FOR THIS SESSION HERE
12:45pm – 1:45pm EDT
HPE Diagnosis and Finding Answers: What’s new in genetics?
Presented by Paul Kruszka, MD, MPH, FACMG, Chief Medical Officer, GeneDX
2:00pm – 3:00pm EDT
Family Caregiver Support Overview: What it is and why it is so important to family wellness
Presented by Angela Shierk, PhD, OTR and Joe (JD) De La Torre, III, OTD
Posted: August 11, 2024 by Leslie, Sammy's mom
Today is the kickoff
Attendees who register after the webinar has started can experience up to five minutes of latency in joining the webinar. These attendees may see the following error message but should retry joining: “You haven’t registered for the event. Please register here to join the event.”
If you are unable to join LIVE, it is still important to register. At the close of each session, all who registered will receive a link to a recording of that session.
Click here for registration details.
Posted: August 9, 2024 by Leslie, Sammy's mom
More Questions and Answers about the HPE Conference
The conference is only a few days away! Have you registered yet? Not sure if you should register or participate? Here are the answers to your questions.
Posted: August 8, 2024 by Leslie, Sammy's mom
What to Expect during the Virtual Conference
As this is our first-ever virtual conference, you may have some questions about what to expect. Click here to register.
Posted: August 7, 2024 by Leslie, Sammy's mom
Register Today for the Virtual Conference on HPE
A message from Susan Millender, Executive Director of Families for HoPE.
Posted: August 6, 2024 by Leslie, Sammy's mom
Register today for the Conference on HPE
From the garden, a message from Steve Harley, President of the Board of Directors of Families for HoPE. Don’t miss out on this great opportunity! Register today!
Posted: August 4, 2024 by Leslie, Sammy's mom
Virtual Conference on HPE is almost here!
On August 11-14, the 2024 Conference on Holoprosencephaly is expanding its reach by convening in a virtual space, allowing access to families from around the world! Register to join this free and exciting, first-time event.
Click here for all of the details