You may be wondering to yourself, why does the HPE community use the term, HoPE?? If you look at the ‘What is HPE’ page, you will see the statistics and prognosis for HPE are somewhat grim. The HPE community has adopted the ‘HoPE’ term, as a reminder to never lose hope. Sadly, hope for HPE is nearly nonexistent in the medical community, but in reality, infants and children with HPE are surpassing the statistics–there are individuals diagnosed with HPE who are now living into their teens and twenties! A diagnosis of HPE is heartbreaking, and the statistics on HPE are devastating; however, the courage and determination of infants and children with HPE and their families are truly inspirational.
The actual term, HoPE, was developed several years ago. While addressing the audience at the 1st NIH Conference on Holoprosencephaly in 2000, Dr. Francis Collins, Director of the National Human Genome Research Institute, noted that HPE is one letter short of spelling “hope”. He challenged his audience to be the “O” team and find the missing letter needed to change HPE into HoPE. Thus, HoPE was born!!
As you will see on this blog, the term, HoPE, is still going strong! We are looking forward to sharing the HoPE in Holoprosencephaly with all of our readers!