HNRNP Family Foundation

09/02/2026

When Catherine’s son, Harrison, was diagnosed with HNRNPU, she found herself navigating a world of questions, information, and unknowns. Her advice for families?

1. Google can help, but it can also hurt. Be mindful of what you read and how much you consume.

2. Remember that no two children with an HNRNP-RNDD will present exactly the same.

3. For Catherine, some of the most valuable guidance has come from other parents and families who understand what it’s like to live with a rare diagnosis every day. Their experiences can offer insight, reassurance, and practical advice that isn’t always found in a doctor’s office.

4. And one reminder she hopes every parent carries with them: You are your child’s best advocate.

Harrison’s journey is uniquely his, just as every child’s journey is their own. But by sharing our experiences, asking questions, and learning from one another, no family has to navigate that journey alone.

Learn more and connect with the HNRNP community at HNRNP.org

Want to share your story? Reach out to Lori at [email protected] 📧

08/19/2026

Standing with our sister organzation Yellow Brick Road Project - YBRP, Inc. in grief today.

There are no words to express the heartbreak we feel over the loss of sweet Alice.

Though her time here was far too short, her life touched so many, and her impact on our HNRNPH2 community will never fade.

We hold Alice’s family close in our hearts and surround them with love and strength during this unimaginable time.

Alice will always be part of our H2 family and forever in our hearts. 💛

05/28/2026

A fantastic practical resource for our families who are newly diagnosed and wondering where to start . Or families who are looking to understand cell and therapies options more thoroughly.

We are delighted to announce the launch of Genes, Brains, and Breakthroughs — a new public awareness campaign from the Department of Paediatrics at the University of Oxford.

You can now watch a fantastic set of videos aimed not only to support affected families, but also to improve wider public understanding, reduce stigma, and encourage more inclusive conversations around neurodevelopmental disorders and therapeutic genomics.

The project was shaped directly by the experiences and questions of parents and carers, helping to ensure the resources are clear, compassionate, and meaningful for families navigating rare genetic conditions.

⏯️ https://www.youtube.com/

A huge thank you to all the families and advocacy groups who generously shared their experiences and expertise to make this project possible, including FamilieSCN2A, GRI-UK, SLC6A1-Connect-UK, and Unique.

Developed in collaboration with families, researchers, clinicians, and advocacy organisations, the campaign features a series of accessible animated videos designed to improve understanding of neurodevelopmental disorders, genetics, and emerging therapeutic approaches.

The campaign was funded by the University of Oxford’s Public and Community Engagement with Research (PCER) Fund and the MRC Centre of Research Excellence in Therapeutic Genomics.

05/22/2026

The SYNCRIP-RNDD GeneReviews is LIVE! Exciting to be able to give patients the resources for their clinicians!

04/28/2026

A special message from Meena Balasubramanian inviting our global community to Sheffield for the 2026 International HNRNP Gene Family & Research Summit.

Join families, clinicians, and researchers as we come together to share knowledge, build connections, and drive progress for HNRNP-related neurodevelopmental disorders.

Registration and childcare close April 30. Space is filling quickly.

Register now: hnrnp.org/events

04/27/2026

Final call to join us in Sheffield 🇬🇧

Registration for the 2026 International HNRNP Gene Family & Research Summit closes April 30 and space is filling quickly. This is your opportunity to connect with families, researchers, and clinicians from around the world all working toward a shared future for our community.

Childcare will be available during the meeting. If you plan to utilize it, please complete the form here:
https://docs.google.com/forms/d/e/1FAIpQLSeawIUAvrvpl-NqtkPQwzyuGEKg1L_UZyzvwBsYjGpx5-sO4g/viewform

Register now before it closes:
www.hnrnp.org/events

04/22/2026

Join us for a delicious way to give back!
Stop by Hot Box in Athens on Thursday, April 30 from 5–8 PM and 15% of your purchase will support the HNRNP Family Foundation.
📍 74 N. Court St., Athens, OH 45701
Grab dinner, bring a friend, and help fund research for our community.

04/22/2026

Speaker Spotlight: Leila Margolis, co founder and President of the HNRNP Family Foundation. In Sheffield, Leila will share the foundation’s vision, therapeutics basics, and building the UK HNRNP-RNDD community. Her leadership continues to help turn hope into action.

04/22/2026

We’re pleased to spotlight Dr. Sarah Wynn, who will present on partnering for progress in rare conditions. Her work highlights the power of collaboration, advocacy, and building stronger pathways forward together.

🌐 www.rarechromo.org

04/21/2026

Speaker Spotlight: Dr. Christopher Ricupero. From biobanking to biomarker discovery and future therapeutics, Dr. Ricupero’s work is helping build critical infrastructure for progress. We look forward to his sessions in Sheffield.