2019 FAMILY MEETING: JULY 25 & 26
This year’s HNRNPH2 FAMILY MEETING promises to be another meaningful event for families, clinicians and researchers. Dr. Jennifer Bain’s Natural History Study continues as both newly diagnosed and returning individuals touched by the disorder engage in assessments to further the understanding of the rare diagnosis. Drs. Korff and Kim from St. Jude Children’s Hospital will update attendees on their learnings about the condition based on the various scientific models they are leading at the renowned institution. Dr. Yael Gruenbaum, director of Medison Ventures in Israel, will share the plans unfurling there to advance the research to directly change the lives of those possessing HNRNPH2 mutations. Finally, parents will share at various pertinent round table discussions to share, support and empower one another.
NEWS PUBLICATIONS / SOCIAL MEDIA
2018 FAMILY MEETING : JULY 26 & 27
The first of its kind HNRNPH2 FAMILY MEETING was held in White Plains NY was held at the Center for Autism and the Developing Brain (CADB). HNRNPH2 Families from all over the world will attended to hear presentations given by medical minds who have shown interest in our group from prestigious institutions including Columbia Presbyterian in NYC and St. Jude Children’s Hospital and orphan drug company, Cydan in Cambridge, MA. Families shared with one another and gained insights to begin documenting the rare disease that connects them. Finally, those touched by HNRNPH2 mutations were administered a battery of assessments and gave bio-specimens to both add to the growing body of knowledge about the diagnosis and provide material needed for further scientific research in laboratories.
2018 PAST EVENTS
We’ve launched! Follow us on Facebook! The Yellow Brick Road Project, Inc. FB page
INTERNATIONAL RARE DISEASE DAY – 2/28/2018 – SPEAKING EVENTS
Trish Flanagan, Morgan’s mom and Secretary of The Yellow Brick Road Project, will be on the panel of speakers at the Albert Einstein College of Medicine event in NY, on International Rare Disease Day. The theme for the occasion is “Rare Disease Day: What Families Can Teach Us”.
Debbie Farkash, Mom to Yaeli and deeply involved parent of The Project, will be among the speakers in Israel at Sheba Medical Center at the hospital Tel-Hashomer International’s Rare Disease Day event. She will spread awareness for the rare HNRNPH2 diagnosis.
“Morgan’s Story” Video wins the American Academy of Neurology’s Neuro Film Festival
YBRP and Morgan’s Story Video AAN 2018 Neuro Film Festival Win featured in Brain & Life Publication by Mary Bolster: Brain & Life : Neuro Film Festival
ISRAELI NEWS PUBLICATION, JULY 19, 2018
Debbie Farkash, mother to young Yaeli who is touched by an HNRNPH2 mutation, shares the tumultuous journey to the rare HNRNPH2 diagnosis and the new journey her family has embarked upon with The Yellow Brick Road Project to find more with the rare disorder and to drive research to develop therapeutics.
2017 PAST EVENTS