The Luca Hill Acrania and Anencephaly Foundation
The Luca Hill Acrania and Anencephaly Foundation is a non-for profit organization dedicated to the families and communities affected by Acrania and Anencephaly. Our mission is to create an environment for families and communites to seek accurate information, find a wealth of support, understand the joy and impact of carrying to term, and raise much-needed funding to further Anencephaly and Acrania research.
The Luca Hill Acrania and Anencephaly Foundation was established in 2014 by Rachel Gilbertsen and Jeff Hill after their unborn son Luca was diagnosed with Acrania and Anencephaly. After the news of Luca's birth defect Rachel and Jeff took straight to books and the internet to research their son's life altering diagnosis. The lack of credible information on Acrania and Anencephaly and the little research that was being done made Rachel and Jeff incredibly frustrated and completely confused. How could information on a defect that is so serious and deemed fatal be so scarce? Why, exactly, was it deemed fatal? Why was there little research being done to learn about the causes and prevention of Acrania and Anencephaly? With the amazing advancements in medical technology why was nothing be done to save these babies? And, most importantly, why did their sons life and safety suddenly not matter to medical professionals becuase he had a serious birth defect? There were so many 'whys' and because of this Rachel and Jeff set out on a journey to learn everything they could about their incredible son and his defects Acrania and Anencephaly.
LHAAF: Luca Hill Acrania Anencephaly Foundation
In 2009 Jeff graduated from Lindenwood University with a bachleors in Buiness and Finance, making him the perfect individual for Treasurer of The Luca Hill Acrania and Anencephaly Foundation. Jeff is also the loving father to Declan and sweet little Luca.
Upon hearing Luca's diagnosis and discovering the lack of credible information and support on Acrania and Anencephaly Jeff knew that him and Rachel had to do so much more for their son and for all these families and babies facing this devestating defect. He is constantly inspired by Rachel's tenacity to make an impact and does everything he can to contribute and support the foundation in honor of his son.
As his role of treasurer Jeff oversees The Luca Hill Acrania and Anencephaly funding, donations, event budgets for LHAAF.
When Jeff isnt busy at his role of Treasurer he works for Total Hockey as a Buyer. During his free time he enjoys watching and playing hockey, teaching Declan the world of sports, and spending his life with Rachel.
By day Rachel is Mommy to Declan, Luca, Emarie and the family fur-baby Backes, an Early Childhood teacher to the sweetest group of kiddos you could ever meet, owner of Growing Hills Academy Early Childhood Center and President of The Luca Hill Acrania and Anencephaly Foundation. By night, she is all of those things plus a researcher, learner, planner, blogger and sometimes only sometimes, she’s a sleeper. Rachel finds the most joy when she is exploring with her children, reminiscing about Luca, watching the spark of curiosity glimmer in her students eyes, and cherishing life’s sweet moments with the love of her life Jeff.
It is her love of children (especially her own), passion for life, and teaching that is the driving force behind her efforts as President of The Luca Hill Acrania and Anencephaly Foundation. She hopes that through Luca’s story and by sharing their families journey with Acrania and Anencephaly, people will not only see the immense amount of joy these babies bring into their lives but also understand the wealth of knowledge we can gain by studying their development and life when families choose to carry their baby to term.
Rachel Hill
PRESIDENT
THE LUCA HILL ACRANIA AND ANENCEPHALY FOUNDATION
Jeff Hill
TREASURER
THE LUCA HILL ACRANIA AND ANENCEPHALY FOUNDATION
Caitlyn Perez
VICE PRESIDENT OF FAMILY AND COMMUNITY OUTREACH
THE LUCA HILL ACRANIA AND ANENCEPHALY FOUNDATION
SECRETARY
THE LUCA HILL ACRANIA AND ANENCEPHALY FOUNDATION
Jake Madden
Kaitlyn Madden
VICE PRESIDENT OF FUNDRAISING
THE LUCA HILL ACRANIA AND ANENCEPHALY FOUNDATION
Board of Directors
Kaitlyn is the Vice President of Fundraising for Luca Hill Acrania and Anencephaly Foundation. She has a Bachelor of Arts in International Relations from Lindenwood University, and has experience working with several non-profit organizations, international and local. She is extremely grateful to have the opportunity to use her previous experience towards Acrania and Anencephaly awareness and the foundation’s mission and be involved in the foundation's expansion.
When she is not working with LHAAF, Kaitlyn loves spending time with her husband and son and their four fur babes, volunteering with her church, and traveling.
Desiree Johnson
DIRECTOR OF ONLINE SUPPORT
THE LUCA HILL ACRANIA AND ANENCEPHALY FOUNDATION
Desiree Johnson is wife to Anthony, a mom of 3 boys; William, Mason and Christian and also mom to a precious angel Isabelle. Isabelle was diagnosed with Anencephaly in November 2011 while Desiree was 11 weeks pregnant and she and her husband Anthony chose to carry Isabelle to term. Isabelle was born sleeping at 38 weeks on May 3rd, 2012.
Desiree has a full time job working in a local hospital as an ER Registrar. She has also been active in her local grief support group since 2012 as well as been active and has experience as a moderator and administrator of on online forum grief support group.
Desiree enjoys spending time with her family, sight seeing and attending community events. Being a former military spouse herself Desiree has taken special interest in supporting family of service members whose unique circumstances add special challenges during times of stress and need.
Jake is Secretary for The Luca Hill Acrania and Anencephaly Foundation.
Jake graduated from Maryville University with a Bachelor of Science degree in Business Administration.
When he is not working with LHAAF, Jake works for General Motors in Wentzville. During his free time he enjoys quality time with his beloved family and playing soccer.
Team Luca
Team Luca is composed of thousands of individuals from around the world that provide help, support, encouragemnt, fundraising, awareness (you name it, they lovingly do it) for Acrania and Anencephaly. They are the backbone to our foundation and each individual plays a key role in the development and success of The Luca Hill Acrania and Anecephaly Foundation! While keeping their love for Luca and desire to help other families in the forefront of their minds, they allow The Luca Hill Acrania and Anencephaly Foundation to sustain its goals of providing education, support, and fundraising to families and communities who have been affected by Acrania and Anencephaly. Go Team Luca!