"Building the Road to a Cure"

Our Mission

The Yellow Brick Road Project is a charitable foundation whose mission is to fund research to identify, understand, treat, and ultimately cure those impacted by HNRNPH2 mutations.  We do this by funding initiatives to identify more individuals with HNRNPH2 mutations, connecting families impacted by HNRNPH2 in order to contribute to the understanding of the disorder, raising awareness of HNRNPH2 mutations in the general public and scientific communities, and by funding research into HNRNPH2 mutations.

"Learning that your child has a rare diagnosis is one the scariest things a parent can go through. Luckily for us, within 24 hours of getting this news we were connected with the YBRP. It was like meeting long lost family. We instantly had a tribe, and a voice, and hope." - Julee Armitage, Mom- Massachusetts, USA.

"My daughter Whitney was 17 before we got her HNRNPH2 diagnosis. Within one hour of getting the letter, we were in touch with the YBRP talking about shared experiences. It was such an emotional experience to find this wonderful group that has given us hope and so much support." - Jennifer Whiting, Mom- Florida, USA.

 “The Yellow Brick Road Project is amazing, because it’s taken families from around the world and gotten them together, and for many of them this will be the first time they’re meeting each other face to face.  And that experience just in terms of realizing that you’re part of something more than yourself and also being able to appreciate that someone else understands you is really profound…” - Dr. Wendy Chung

"Ainda me lembro do dia em que soubemos da existência de outras famílias HNRNPH2 e do YBRP... a sensação de encontrar pessoas que realmente nos entendem e conhecem a nossa menina quase como se ela fosse também a deles. Estávamos sozinhos e assustados e de repente sentimo-nos mais fortes e apoiados – a melhor sensação depois da tempestade e do sem fim de perguntas que nos dominavam. Saber da existência do YBRP e da sua missão deu-nos esperança. Soubemos desde aquele momento que não seríamos deixados de lado no nosso pequeno país ensolarado, afastados de todos os estudos e investigações possíveis. Somos Raros, mas somos abençoados e sentimo-nos orgulhosos porque podemos fazer parte deste incrível projeto. Não estamos mais sozinhos." - Andreia Lages Ramos, Mom-Portugal

The friends Dorothy made on her journey to meet The Wizard of Oz, in the timeless 1939 film, inspired the name of our organization.  Like the Scarecrow who wishes for a brain, our children's neurological development is severely impaired and impacts everything; we strive to improve cognition.  Like the Lion, these individuals suffer from anxiety; we strive to find ways to give them confidence and courage to navigate the world.  And what about the Tin Man?  He longs for a heart in the story; we strive to give these individuals a more fulfilling life, free from HNRNPH2 and everything this disorder has stolen from them.  Dorothy, as the story goes, wants to return home, to where she belongs.  Help us on our journey, on our Yellow Brick Road and our quest for a cure!

A Genetic Diagnosis Matters!

YBRP and the Quest for a Cure

From the Blog

  • Paula Tyson
  • Stacy Paddon

Annual International Family Meeting

YBRP connecting families and researchers around the world

YBRP in the News

"Great HNRNPH2 Walk" and Autumn's Story shared on BBC Radio

"Great HNRNPH2 Walk" and Autumn's Story shared on BBC Radio

On Saturday the 9th & Sunday the 10th of September, the Yellow Brick Road Project charity is holding the first national sponsored walk along th...
  • Lori Arnold
The Decision We Wish We Could Make With Our Daughter Rather Than For Her

The Decision We Wish We Could Make With Our Daughter Rather Than For Her

The Decision We Wish We Could Make With Our Daughter Rather Than For Her This wonderful article was written by one of YBRP's Board Members and HN...
  • Stacy Paddon

Rett-like Phenotypes in HNRNPH2-Related Neurodevelopmental Disorder

Atypical RTT is diagnosed when a child shows some but not all the phenotypes of classic RTT, along with additional supporting criteria. Our team has characterized HNRNPH2-related neurodevelopmental disorder (HNRNPH2-RNDD) in 33 individuals . We sought to further characterize RTT clinical features in this group of individuals by using caregiver report. Based on the survey results, 12 individuals could meet the diagnostic clinical criteria for atypical RTT Syndrome. In summary, individuals with HNRNPH2-RNDD exhibit clinical characteristics that overlap with those of RTT, and therefore, HNRNPH2-RNDD, should be considered on the differential diagnosis list with this clinical picture.

  • Lori Arnold

YBRP in Pharmacy Times: The Journey of Commitment to Ultra-Rare Disease Patients

YBRP gets a shout out in this great article by Chris Adams of Cydan, one of the amazing speakers at the 2019 Family Meeting.  The article discusses the important role of parent led organizations and how the biotech and pharmaceutical industries can impact rare disease communities just like ours. (originally published August 2019)

  • Paula Tyson

Morgan's Story

learn more about our HNRNPH2 cutie, Morgan

Instagram