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.
“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
“This community that I’ve become a part of now, has really created a support system for me to be able to understand what Kaleb has. A lot of questions still in my mind, but at the same time I didn’t feel like I was hitting a dead end anymore.” Lyndsy Martinez, Mom- AZ, USA
"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
From the Blog
YBRP in the News
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
Co-founder Trish Flanagan discusses in an article the juggling act of ensuring we meet the needs of our special needs children and their neuro-typical siblings, and Morgan's Story wins Grand Prize for Neuroscience in the 2018 Neuro Film Festival (originally published June-October 2018).
- Paula Tyson