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.
New NIH study on Environmental Determinants of Holoprosencephaly
We understand only a fraction of the causes of holoprosencephaly and what leads to the wide spectrum of clinical features seen in patients with holoprosencephaly. In this new environmental study, we are trying to better understand the different factors that can contribute to holoprosencephaly and its presentation that often varies from patient to patient.
What does the study entail?
Filling out out a 45-minute online survey
What does the survey ask about?
The survey asks about your pregnancy and the three months before pregnancy. Please go to http://hope.ctss.nih.gov to get more information.
We are actively recruiting to reach our study goal of 200 participants!
If you are interested in filling out the survey:
*There is no compensation for this study