888-533-4443 Info@FamiliesforHoPE.org 1219 N. Wittfield Street, Indianapolis, IN 46229

Database Project

Have you heard of Marie Kondo and her method of organization? Marie Kondo is an organizing consultant and author of the best-selling book, The Life-Changing Magic of Tidying Up.  Her method encourages getting rid of physical items that do not bring joy into your life.

At Families for HoPE, we have nearly 1,000 HPE families in our database, and as we review each record in our database, we recognize that every child and HPE family brings great JOY into our organization, our lives, and our world! We are keeping all of your records because you’re important to us, and we want to stay in touch with you.

As a result, we are embarking on a project to review each database record to ensure that we have the updated and most current information for your family.  Volunteer Theressa Newlin (HPE mom to Tyler from Texas) is coordinating this project, and if Theressa reaches out to you, please know that she is doing so on behalf of Families for HoPE.

If you would like to update your family’s contact information or provide new or additional information related to your child, please feel free to reach out to Theressa at Theressa.Newlin@FamiliesforHoPE.org.

2019 HoPE Dads Retreat

Registration is open for the 2019 HoPE Dads Retreat to be held in Scottsdale, Arizona on October 11, 12, 13 and 14, 2019! This retreat is limited to only 14 dads so don’t delay in registering!

Vision: To bring HPE dads together for a weekend retreat for the purpose of finding and sharing hope through activities for learning, growing, bonding, laughing, and playing.

Roxanne Steele

Written by Roxanne Steele

Growing up in Indiana in the 1970’s and 80’s, I have to admit I never encountered many people who were different.  Yes different races and economic factors but not anyone with any real disability. 

Alone No More

Written by Karina Lehoux

In December 2008, my Zoé was born, and I found out a few days later that she had semi-lobar holoprosencephaly.  As soon as I could, I jumped on my cell (this was before smart phones, just think looking something up in a 1″ x 1″ little screen) to try to find anything I could about HPE.  Shortly after that, I had found out there were three types and that was pretty much all I could find.  No Facebook group I could find, just a little girl in Europe. For about a year, that is all I could find. As a single mom, hospital stays were long and very lonely).

HoPE Walk ‘N’ Roll

First Annual HoPE Walk ‘N’ Roll festival

Families for HoPE, Inc. is a 501(c)(3) nonprofit organization formed to address the needs of families and children diagnosed with holoprosencephaly (HPE) and related brain malformations.

Deeply committed to raising awareness of holoprosencephaly, a group of HPE families in Arizona are joining together to host an awareness event and fundraising walk on November 9th 2019. The event will be held at Power Ranch Park 4546 E Haven Crest Dr Gilbert, AZ 85297

Grandparents View

While I’m preparing to complete the 2020 conference registration for Dorothy and I, we were talking about last years event.  2018 was my second conference.  The first was in 2008 when Chloe was a baby and I learned so much about HPE and about my granddaughter (pictured).  

Exhausted

For the exhausted mom who hides a few minutes to cry in the bathroom…

For the mom hidden in the bathroom, because she needs a few minutes of tranquility while slipping tears from her eyes.