Coloring is a hot trend for adults, and gathering a group of individuals together to color is a unique way to raise awareness of HPE! If you are interested in using coloring as a way to raise awareness of HPE and raise funds for Families for HoPE, we can help you do so.
If you are willing to host an awareness coloring event/fundraiser in your community with 25 guests, Families for HoPE will provide you with the following favors to give to your guests:
25 sets of 12 colored pencils with built-in sharpener
25 HPE wristbands
25 latex balloons
2 HPE-themed t-shirts to use as door prizes
(Coloring pages will not be provided by Families for HoPE because we want to give you the flexibility to choose the coloring pages in themes that your guests would enjoy.)
This is a limited opportunity as we have only enough pencil sets for 6 individuals to host a coloring event/fundraiser. We would suggest that you host your event in a church, school or community center and provide simple snacks, cookies, and punch to keep your costs low; however, it’s your event so be as creative as you wish. A suggested fee per attendee would be $10-$15 per person, but you know your attendees, so we encourage you to designate a cost that is in keeping with what your guests are willing to pay based upon the event you’ve planned.
If you are interested in hosting a coloring event to raise awareness of HPE and raise funds for Families for HoPE, please contact Leslie Harley at Leslie@FamiliesforHoPE.org for more information.
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!
As we approach Holoprosencephaly Awareness Week on March 27-April 2, we wanted to find a special and lasting way to memorialize all of our precious children who have passed away with HPE.
As you may know, at each of our Family Conferences on HPE we do a memorial balloon release, and each balloon carries a brief “love letter” addressed to each of the deceased children in our database. The balloon releases are lovely and special for all of those involved, but we want to do more.
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 little ones.
Our desire also is to have a memorial that is tangible and lasting. We have commissioned a plaque to be hand-painted and personalized with the words “Families for HoPE” and “Always in our hearts”. From the plaque will hang small circles and upon each circle will be the first and last name of a child who has passed with HPE. All of the circles will hang down in rows with small s-shaped hooks. This will allow us to display the plaque at our conferences, and during the memorial ceremony, we envision reading each child’s name aloud and then re-hanging each child’s circle on the plaque after it has been read.
When the conference is not in session, the plaque with its circles 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 be no need to ever add a new name to the plaque.)
The names of all of the deceased children in our database will be added to the plaque, but if you would like to contribute to the creation and maintenance of the memorial plaque in memory of your child or in memory of a deceased HPE child who has touched your heart, please click “Donate Now” and complete the Tribute section in memory of that child.
As soon as the plaque is finished and displayed, we will be following up with photos allowing you to see the plaque in its finished state.
Thank you for your support of this special project.
On the final afternoon of the 2016 conference while the families were making preparations in anticipation for the long-anticipated HoPE Prom, Families for HoPE received word of a protest planned for 5pm in the vicinity of Dealey Plaza near where the Prom would be held that evening at the Dallas World Aquarium. With rumored threats and the potential for violence, our Families for HoPE leaders made the decision to move our HoPE Prom to a safer location.
This was all made possible by Kristy Rempel (Liam’s mom) who lives in the Dallas area and works on the event planning team at Toyota Stadium in Frisco, Texas. Along with Kelly Irvin (Ryker’s mom), Kristy served as co-chairwoman of the Prom committee, and these two HPE moms orchestrated the last-minute transition of the food and catering team, the DJ and the photographer who had all begun on-site preparations at the aquarium. The conference committee members communicated with each family, and within the hour nearly 400 Prom guests were making their way to the new Prom location!
When the HPE families arrived at Toyota Stadium, they didn’t mind that there were no spectacular aquarium exhibits or fancy centerpieces on their tables; instead, everyone was excited and jubilant just to be there for that special moment of celebration and hope! This is the definition of the journey of HPE——life may not be the perfection that we once dreamt it to be, but we can find hope and celebrate wherever the journey takes us.
Many HPE families refer to their lives as a journey. In her essay Welcome to Holland, Emily Perl Kingley relates life as the parent of a child born with a disability as a much-anticipated trip with an unanticipated destination and unimagined experiences.
There is no denying that the earliest stage of the HPE journey is emotionally devastating and without hope. This is the “Why?” phase of the journey because the answer to that one-word question is what all seek but very few find.
There is also the “What if…?” phase, and that’s where one travels from hopeless to hopeful.
Next is the “What about…?” phase where new dreams and possibilities exist and advocacy becomes a focus.
And sometimes the journey transitions into the “What now…?” phase where the silence is loud and a parents’ arms were once full but are now empty.
It is a journey that is both grueling and heartbreaking, but also beautiful and momentous. Embrace the Journey.
Round 1 – February 24-March 3
Would you like to see your name here? Donate Now!
Aaron and Debra Gatewood
Neal and Janet Quast
Susan Ekelman-Storey, in honor of Charlie Dawn
Judee Howard, in honor of the Irvin family
Roxanne Steele, in memory and celebration of our journey with Rachel
For the second year, Families for HoPE has been selected to participate in Brackets For Good 2017! This is the only sport for nonprofits and everyone can play in this game! The competitive giving action tips off the evening of Friday, February 24th and we need your help! In Round 1, our opponent is Outrun the Sun, an organization in Indianapolis, and we need to score more points than they do by 7:59pm on Friday, March 3.
In the 2016 tournament, Families for HoPE (aka the Cinderella Team) won Round 1 against our opponent American Heart Association of Indiana! We advanced to Round 2 and were pitted against a tournament veteran, the Joseph Maley Foundation. We were not victorious in Round 2; however, Families for HoPE raised over $10,000, and we were selected as #1 of BFG’s Indy Top Ten Round 1 highlights! The Joseph Maley Foundation went on to win in subsequent rounds and earned the title 2016 Indianapolis Brackets For Good Champion.
In 2017, we want to win Rounds 1 and 2 and advance to the “Supported 16”, and here is how you can help our cause have success in Philanthropy’s BIG Dance!
Can we count on you to be an MVP for Families for HoPE?
In July 2016, over 70 HPE families embarked on a journey from all corners of the U.S. to Dallas, Texas for the 2016 Family Conference on HPE. Held biennially, the conference is a collaborative endeavor among Families for HoPE, the Carter Centers for Research in Holoprosencephaly, Texas Scottish Rite Hospital for Children and National Institutes of Health. The conference educates families on the latest advances in treatment and research, along with hands-on workshops and social sessions to enrich the lives and health of the families who attend.
Only a few days prior to kicking off the 2016 conference, we learned of the deadly sniper attack on police officers in downtown Dallas. The HPE families each evaluated the situation knowing that they would be traveling to a city where tensions were expected to run high.
As a group who epitomizes hope in the midst of great uncertainty, each of our HPE families resolved to embrace the journey, to press onward and to share their hope with the grieving citizens of Dallas.