Hello, I’m Virginia, I have a little girl, Violeta, (3 years) with HPE semilobar and we live in Buenos Aires. She’s a cutie and she doesn’t have health issues (touch wood). Of course she has delays. I write a blog about living with a special kid (it’s in spanish: https://tenerunhijocondiscapacidad.wordpress.com/
In memory of Paige . . .
This photo montage was created by Bridget Eckert, in memory of her baby sister Paige. Thank you Bridget for Sharing the HoPE in HoloProsEncephaly!
got HoPE? Contest
In 2010, we designed the “got HoPE?” shirts for a fundraising walk in Indianapolis. The picture below is from that walk. The person wearing our “got HoPE?” shirt in the photo below is a public figure. The first person to comment on this blog entry and correctly name this person will be awarded a Families …
5K Run/Walk for HOPE in Southern California on October 15
Inspired by her 11 month-old daughter, Reagan, Roselle Martinez has been a very busy woman. Roselle approached Families for HoPE a few months ago with a desire to organize a run/walk to raise awareness of HPE. Since that time, she has been tireless in her efforts to recruit sponsors, runners, and support for the 5K …
Run, Coach, Run
To paraphrase a well-known quote, “A journey of 1 million steps begins with a single HoPE”. HPE grandfather Dennis Clifton (aka Coach) is on track to break a Guinness world record tomorrow with 1 million steps taken in 31 days all for the sake of HoPE! A resident of the Cincinnati, Ohio area, Coach is …
Racing for HoPE
If the rain will hold off, awareness of HPE will be spread throughout the northeastern part of Indiana today. Today is opening day of the 2011 racing season at Baer Field Speedway in Fort Wayne, Indiana, and Late Model driver Josh Timmerman will be driving his #09 Chevy Impala which bears the Families for HoPE …
Something to say…
There are times when I sit in front of a blank screen hoping for something profound or inspiring to write about, and nothing comes to me; therefore, I have nothing to say. Of course, I think it’s actually that I have something to say; I just don’t know how to say it. At the HPE …
Happy Halloween
Halloween can be a challenge for parents, and there are so many uncertainties that we face. What costume? Will it keep my child warm enough? How do we incorporate the wheelchair into the costume? How do we get to the front door if there are steps? My child has a g-tube, so what do we …