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

Tag: holoprosencephaly

Meet Abigail

(Written by Michelle Alexander) 13 years ago, I laid bleeding to death. I had just seen my only baby girl for the first time without the fuzziness of an ultrasound. She was beautiful. For 7 hours, I laid in recovery while my body threaten to give up. Thinking of the only real picture I had …

Meet Mary and Robert

(Submitted by Pat Wright) HPE is not a rare disorder in our immediate family, 50% of the children have HPE, and it has not prematurely taken the lives of the affected children, as one is 32-years old and the other is 23-years old. It has however taken us down a road of understanding and certainly …

Songs for your journey of HoPE

Music often helps us get through different phases in our lives. We want to know what kind of music HPE families listen to, as they experience different moods. We have created some playlists on the Families for HoPE Pinterest board for different moods/themes! Do you have favorite songs to share?  We are seeking songs for encouragement; songs about motherhood; songs …

March 10-16 is Holoprosencephaly Awareness Week!

March 10-16 has been designated as Holoprosencephaly Awareness Week! Over the course of the next several days, we would ask that you look for opportunities to share the HoPE you’ve found in Holoprosencephaly.  Use your favorite social media accounts to reach others, and encourage those others to share the HoPE with their social media contacts.  …

Save the Date for the 2014 Family Conference on HPE

Well, the wait is over! Grab your family calendar and save the dates! We want to invite you and your family to Dallas, Texas on October 2-4, 2014 for our 2014 Conference: “HoPE in the Heart of Texas”. The conference is a collaboration between Families for HoPE and the Carter Centers for Brain Research in …

My Journey

by Renee Hansen, Dakota’s mom Dakota Jade was born September 29, 1994. We did not know of her HPE when she was born. Days after she was born, we were told she had Semi Lobar Holoprosencephaly and if she did live, she would NOT have a life worth living. The doctors were WRONG. I made …

Do you have a wish list?

Have you created a wish list for the Mothers Day Madness fundraiser?  You can use your Pinterest account to pin your favorites items, then share a link to your Pinterest board with your family and friends so that they know what you would want for Mother’s Day, birthdays, holidays. Use these links to visit the …