As we approach the 2018 Family Conference on Holoprosencephaly, we want to share with you how we will honor and remember those we love who have passed away with HPE.
As you may know, at each of our past family conferences on HPE, we have had a memorial balloon release. The balloon releases are lovely and special for all of those involved, but we also want to be mindful of our environment and the harm that releasing hundreds of balloons can cause to wildlife.
Instead of a balloon release, all in attendance will blow bubbles into the air in memory and celebration of the children who are no longer physically with us. This is why our new logo is shaped like a bubble. Do you see it?
In addition to blowing bubbles, it is our desire is to conduct a memorial ceremony at the conferences where we can read the names of our children in tribute to the impact they have had on all our hearts. We have heard of an old Jewish proverb that says a person dies two deaths. The first is the physical death; the second is when that person’s name ceases to be used. We don’t want that to happen with our loved ones, so our conference agenda will include “Memorial Ceremony and Reading of the Names”.
It is also our desire to create a physical memorial that is tangible and lasting, so we commissioned a special board from which will hang the names of each individual who has passed away with HPE. This memorial board will be on display at our conferences and will be incorporated into our memorial ceremony. When the conference is not in session, the board with its names will be on display in the Families for HoPE corporate office and names will be added when necessary. (Although we sincerely desire that there would never be a reason to add additional names to the board.)
We want to ensure that no names have been overlooked, so please view the photos (grouped according to the first letter of the child’s first name) and let us know if your child’s name should be added to the memorial. You may submit his/her name using our online form or by sending an email message to Roxanne.Steele@FamiliesforHoPE.org.
Thank you for your support of this special project.
With our recent logo change, we have revamped some of our written materials. This week, we prepared a mailing to over 800 HPE families in the U.S. and internationally. If you have or had a child with HPE, and you do not receive an envelope in the mail from us within the next week, it is likely that we don’t have your current mailing address.
You may send your contact information to our Secretary, Roxanne Steele at Roxanne.Steele@FamiliesforHoPE.org or you can send your child’s and family’s information to us through our online registration form.
If you have any questions, please contact Leslie Harley at Leslie.Harley@FamiliesforHoPE.org.
The Family Conference on Holoprosencephaly is the only conference in existence focusing on the topic of HPE, and this conference continues to be a model among rare disorders in that it brings 100+ affected families together with leading research scientists and clinicians. Attendees representing multiple countries come together to focus on daily living skills, medical needs and scientific research progress. Your sponsorship of this remarkable event will have a lasting impact on bringing hope to the lives of the children and families who attend this conference.
For these families, this event is more than just a conference. It is the pinnacle in their journeys of HoPE; it is their symbolic Mount Everest. The medical community at large receives minimal clinical education about HPE, so parents become the “experts” in HPE. This conference further empowers them with increased knowledge and understanding of the science behind the diagnosis; yet, also addresses the hope that exists beyond the heartbreak.
We are seeking sponsors for the 2018 Family Conference on HPE. To request a copy of our sponsorship proposal, please contact me at Josh@FamiliesforHoPE.org or Leslie Harley at Leslie@FamiliesforHoPE.org.
President of the Board of Directors
Families for HoPE, Inc.
Families for HoPE was formed in 2006 as an all-volunteer organization to serve the needs of children with HPE and their families. Twelve years ago, we had 2-3 new HPE families contacting us each month on average. Today, we can average 2-3 new families per day. The popularity of social media has had a huge impact on the number of requests for our services, and as a result, we have recently undertaken a strategic look at where we are today and where we want to be in the future.
In 2017, we engaged a consultant who has provided recommendations and guidance to increase our organizational effectiveness. Over the coming weeks and months, we will be implementing changes that will enable our organization to grow and flourish. This will allow us to invite more of our HPE families to become volunteers and reach more families needing our services.
This week, we have shared our new corporate logo, and you will soon see updates and new information on our website, fun opportunities for raising awareness and funds, opportunities to volunteer, and more!
We are very excited to begin this work, and we seek your patience as we work through these positive growing pains.
GAMES ARE WON WITH BUZZER BEATERS! This is the best way to keep our opponents guessing…and ensure we make it to the next round.
When checking out, select the “Buzzer Beater” option. When you choose this, your donation will be doubled, with half posting at the time of checkout and the remaining half posting just after the final buzzer on Friday at 8PM EST
Oh boy, do we have a match for you!
A generous donor has contacted us this morning, and he wants YOU to join him on #TeamHoPE to score points for Families for HoPE.
For every individual who donates $25 (or more) TODAY, he will contribute $25. Your 25 points will double to 50 points, and every point counts!
Take advantage of this opportunity to get 25 matching points
just by giving.
Our conferences are referred to as the Family Conference on Holoprosencephaly because it really is about the entire family. The siblings of our special children are encouraged to attend our conferences, and we have special activities to help make them feel celebrated and an important part of our HPE family.
At the end of the 2016 conference, 11 year-old Dalton (big brother to Teagan with HPE) told his mom Keisha, “No matter where the next conference is, we have to go! This is the most fun I think I have ever had. One of the best times I’ve ever had.”
Dalton told her that “making friends with Nick” was his favorite part of the conference. Nick who was 19 years old at the time of the conference is a favorite of many with his huge smile and generous hugs. While Nick may be described by some to be the strong, silent type, Dalton listened with his ears and with his heart to hear the language of friendship.
Being around other families who were like his own family and being with kids like Teagan and Nick made Dalton feel happy, he said.
To know that Dalton was able to create a lasting memory of our conference and wants to make that journey again, that means the world to us!
Families for HoPE is hosting a Halloween Costume!!
Vote for your favorite one!
The photo receiving the most votes wins the grand prize of a Visa Gift Card in the amount of $250 or a credit of $250 toward registration fees for the 2018 Family Conference on Holoprosencephaly to be held June 10-14 in Cincinnati, Ohio.
2nd place will be awarded a Visa Gift Card in the amount of $100 or a credit of $100 toward registration fees for the 2018 Family Conference on Holoprosencephaly to be held June 10-14 in Cincinnati, Ohio.
3rd place will be awarded a Visa Gift Card in the amount of $50 or a credit of $50 toward registration fees for the 2018 Family Conference on Holoprosencephaly to be held June 10-14 in Cincinnati, Ohio.