Families for HoPE, Inc. would like you to “Save the Date” for the 2018 Family Conference on Holoprosencephaly to be held at the Great Wolf Lodge and Conference Center in Cincinnati/Mason, Ohio. The conference will be held from check-in on Sunday, June 10 through check-out on Thursday, June 14. The conference is a collaboration between Families for HoPE, Inc. and the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations. Additional details will be forthcoming over the next several weeks.
To share a little perspective on how we select a conference location, the planning and execution of our conferences is a huge endeavor involving months of preparation, countless volunteer hours, and nearly constant fundraising, among other factors. To be successful, it requires a dedicated team of individuals who lives/works in or near the host city with access to resources, volunteers, and a willingness to essentially serve as the hands and feet of our organization for a 12-18 month period of time. As we want every family to have an opportunity to attend, the most challenging part of our conference planning is the fact that it is impossible to choose a location that will satisfy everyone. We must take into consideration a location that will be affordable for travel as to alleviate additional financial burdens to our HPE families, a facility that provides amenities for our group’s special needs and allows room for growth as each conference brings an increase in attendance.
As much as we would like to announce a location for the anticipated 2020 conference, further research and evaluation must occur to ensure all of the above factors are taken into careful consideration. For now, our immediate attention is on the 2018 conference to make it an affordable, fun, and a memorable experience for you and your family. We hope to see you in Cincinnati in June 2018!
The Board of Directors of Families for HoPE, Inc
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.
I am often asked why I smile so much. Often, these inquisitive ones are looking only at the difficulties in caring for a medically fragile child as a 24/7 job. I respond simply, “I can either cry about it or laugh about it; I choose laughter.”
Humans are social creatures, and humor is one of the greatest interactions we have that connects us to one another. We laugh in countless situations in countless settings, from family dinners to friendly get-togethers. Even when first meeting someone, a well-placed and proper joke does wonders in breaking the ice and paving the way to more casual interaction. Humor is fun, easy, usually free, and makes us feel comfortable being around one another in everyday social settings—something that is often overlooked when meeting a child with special needs.
Studies have shown that laughter really is medicinal. In fact, laughing is similar to exercising in that it works your core muscles and stimulates the cardiovascular and respiratory systems. When you have a good, hearty chuckle, your body increases endorphin levels and reduces stress hormones such as cortisol and adrenaline. Subsequently, your body’s stress responses diminish: blood pressure lowers, muscles relax, and mood improves. Not only will you feel refreshed after a good giggle fit with friends but that shared chuckle over the ridiculous demands of doctors, therapists and home lives also helps your immune system stay active.
I came across an acronym based on the word “LAUGH” to help folks remember how to find humor every day.
Now, get out there and use that humor of yours to laugh at all these lemons life inexplicably puts in your pockets.
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.