NBIA Disorders Association

10/15/2026

New connections, a growing global community, and a milestone celebration with a little extra flavor. 🌍💙

This Throwback Thursday, we’re revisiting moments that brought our community closer and helped move research forward. Swipe to discover how families, researchers, and advocates came together to make it happen!

10/11/2026

For nearly three decades, Dr. Susan Hayflick has pursued answers to some of the most complex questions surrounding NBIA disorders. Her curiosity, perseverance, and commitment to families have brought light to the unknown, transforming our understanding of these rare conditions and expanding what is possible in research and care.

As a physician-scientist, Dr. Hayflick has connected the laboratory, the clinic, and the NBIA community, inspiring collaboration and guiding new generations of researchers. Above all, her dedication has changed the lives of countless patients and families. Today, she continues to look ahead, with every discovery bringing new possibilities into view and leading us toward a brighter horizon.

Watch this special tribute honoring Dr. Hayflick’s journey and her continuing contributions to the NBIA community and enjoy this heartfelt moment we shared at the 30th anniversary celebration with us. 💜

Thank you, Dr. Susan Hayflick for 30 years of dedication to the NBI...

10/10/2026

What began as one mother’s search for answers grew into something far greater. In 1996, Patricia Wood founded the NBIA Disorders Association, planting a seed of hope for families affected by NBIA disorders.

For 27 years as president, Patty led with determination, love, and compassion, bringing families, researchers, and supporters together around a shared mission. Today, 30 years after that first seed was planted, those roots remain strong, supporting a growing community, inspiring new discoveries, and carrying forward the hope that started it all.

Join us in reliving one of the most heartwarming moments of our 30th Anniversary celebration. Watch this special tribute to Patty and the community she helped build. 💙

Thank you, Patricia Wood, for 30 years of service to the NBIA commu...

10/09/2026

Thank you for making our 30th Anniversary weekend unforgettable!

Our 30th anniversary was a celebration of the people, partnerships and progress that have shaped NBIA Disorders Association over the past three decades.

We were honored to recognize founder Patricia Wood and Dr. Susan Hayflick for their lasting contributions to the NBIA community and to welcome Stanford Medicine as our newest Center of Excellence. Collaborative scientific meetings, research updates and time connecting with families reminded us of how far we’ve come and the possibilities ahead.

Chris Lazzara, co-founder of the Isa Elaine Foundation, spoke about collaboration as the key to our future, from advocacy on Capitol Hill to expanding clinical care and supporting families. We are grateful to Chris and Rachel Lazzara for the foundation’s generous $50,000 contribution to support families and NBIA Disorders Association’s work.

Thanks to our sponsors, whose support covered 100% of our anniversary weekend expenses, along with generous donations and auction contributions, we raised an incredible $75,000 toward our mission!

A special thank you to our planning committee and everyone who helped gather and donate auction items. We couldn't have done it without you!

Our theme, Strong Roots, Bright Horizons, reflects both the strong foundation built over 30 years and the promise of what lies ahead. Thank you to everyone who joined us in Indianapolis and continues to make our work possible.

Here's to the next 30 years!

Thank you to all of our NBIA families, scientists, clinicians, spon...

09/25/2026

A special thank-you to Sue Laupola, a Seed of Hope Sponsor of our 30th Anniversary Celebration! Sue has been part of the NBIA Disorders Association story from the very beginning as a founding board member and Patty Wood’s childhood friend. Her connection to Patty and this organization spans decades, and we are so grateful for her continued support. Thank you, Sue, for helping us celebrate 30 years of progress and for being part of the work that carries this mission into the future.

09/25/2026

A special thank-you to Sarah Doerr, a Seed of Hope Sponsor of our 30th Anniversary Celebration! As the chair of the NBIA Disorders Association board and a mom to Max, who has PKAN, Sarah brings both personal experience and a deep commitment to our community to her work with the organization. Thank you, Sarah, for your continued leadership and generosity. Your support helps sustain hope, connection and progress throughout the NBIA community.

09/24/2026

A special thank-you to Peter Pawlowski and Sherri Hansen, Seed of Hope Sponsors of our 30th Anniversary Celebration! Peter and Sherri are dedicated supporters of BPAN research in honor of their daughter, Zoe. We are also grateful for Sherri’s service on the board and her commitment to the NBIA community. Thank you, Peter and Sherri, for your continued generosity and for helping us celebrate 30 years of progress while supporting the work of the NBIA Disorders Association and building hope for the future.

09/24/2026

Thank you to the INAD Foundation of Australia, a Seed of Hope Sponsor of our 30th Anniversary Celebration! The INAD Foundation was founded by the Taylor family in honor of their daughter Mila, who has INAD. The INAD Foundation is working to support University College London’s INAD gene therapy efforts. We are grateful for your support and partnership within our global NBIA community.

09/23/2026

We are proud to recognize INAD Warriors Inc. as a Scientific Discovery Sponsor! INAD Warriors began in support of the Kays family and their son Warner, who has INAD. They continue to rally the Indianapolis community through annual fundraisers for research and family support initiatives throughout the NBIA community. We are so thankful for their partnership and support of our 30th Anniversary Celebration. We look forward to working with you in the continued pursuit of research, progress and hope.

09/23/2026

A heartfelt thank-you to Poppy’s Path, a Seed of Hope Sponsor! Poppy’s Path was founded by the Pete Roy-Smith and Kaitlin Eagles in honor of their daughter Poppy, who has BPAN. We are grateful for your continued support and helping to grown BPAN awareness in Canada. Your partnership helps us celebrate 30 years of the NBIA Disorders Association and plant seeds of hope for the future.