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. 

 

  

 

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.

jhill@lhaaf.org

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. 

rhill@lhaaf.org

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.

kmadden@lhaaf.org

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.   

djohnson@lhaaf.org

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. 

jmadden@lhaaf.org

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!

 

 

 

Acrania Anencephaly Support Aware
10402503_312006745662725_1662880848689586074_n
10885015_312006758996057_5696088286316105962_n
12510_323129221217144_4152823144531482687_n
10806332_323694237827309_5669462025974859723_n
10994270_342712932602283_2319905152773987219_n
10647043_10206114896332470_562334438562282256_n
10987457_10206114896732480_5690825058831190003_n
1499551_10206114897852508_8504867444933359650_n
10292526_311468702383196_3066926487390376559_n
10923238_320387261491340_2493832278007116172_n
10968437_806608039375853_3857458860854549935_n
10881697_10203407015838235_3609021220169892264_n
10522887_10152919567972641_5815852003996095265_n
10422579_10204469690481230_9160947262945150269_n
Edited Image 2015-3-28-20:42:3
10432123_10101450508336804_682747568633522138_n

"The best way to finding better prevention, treatment, and a cure is to make people more AWARE!"

All donations granted to the LHAAF go directly towards Anencephaly research and our foundation's efforts to create more awareness, support, and education to families and communites that are affected by NTDs.

LHAAF IS A 501C3 FOUNDATION. ALL DONATIONS ARE TAX DEDUCTIBLE TO THE FULL EXTENT OF THE LAW

Luca Hill Acrania and Anencephaly Foundation  LHAAFdn@gmail.com    636-293-4537    126 Hollow Creek Court -St.Peters MO 63376    

 

The Luca Hill Acrania and Anencephaly Foundation strives to provide you with the most current and up to date research, stories, statistics, and overall information in regards to Acrania and Anencephaly. We are not Medical Professionals and we are not qualified to diagnose or treat any conditions.