NBIA Disorders Association

NBIA Disorders Association NBIA Disorders Association is a non-profit organization dedicated to NBIA community efforts.

Amber Denton, President of the NBIA Disorders Association, and Chris Lazzara, Co-founder of the Isa Elaine Foundation, m...
06/05/2026

Amber Denton, President of the NBIA Disorders Association, and Chris Lazzara, Co-founder of the Isa Elaine Foundation, met at the U.S. Department of Health and Human Services with Dr. Stephanie Haridopolos, Principal Deputy Assistant Secretary for Health and Director of National Health Communications (performing the duties of the U.S. Surgeon General).

We shared our experiences as parents and advocates for individuals affected by BPAN and NBIA disorders. We are deeply grateful to the Department of Health and Human Services for their time, openness, and genuine interest in our community’s needs.

It was a meaningful conversation about the daily realities our families face and why continued progress in care, research, and treatment development is so vital. The NBIA Disorders Association and the Isa Elaine Foundation are proud to work side by side — because we are truly better together.

This work is personal. It’s about the individuals living with NBIA, their families, and the hope that the next chapter can be brighter than today. Every step forward brings real hope for those affected by these ultra-rare neurodegenerative diseases.

Thank you, Dr. Haridopolos and the entire team, for your leadership and partnership on this journey. More from our time on Capitol Hill will be shared in the June issue of NBIA News — stay tuned!

This fall, NBIA Disorders Association is proudly celebrating 30 years of advancing research, supporting families, and bu...
05/28/2026

This fall, NBIA Disorders Association is proudly celebrating 30 years of advancing research, supporting families, and building a stronger community. 💙

As we prepare to celebrate this milestone, we would love to take a walk down memory lane with all of you. We are looking for your favorite photos, memories, and moments from the past 30 years of our incredible NBIA community to help tell our story.

Please share your favorite photos in the comments below or send us a DM! We are hoping to feature community photos as part of our celebration centerpieces and anniversary displays.

While we may not be able to include every photo shared, we will do our very best to feature as many memories and faces as possible.

Thank you for being part of this journey and for helping us celebrate 30 years of hope, connection, and progress. ✨

Want to celebrate with us in Indianapolis this September? Tickets for our 30th Anniversary Celebration will be available soon. Stay tuned! 🎉

We are honored to highlight INADCure Foundation as a Scientific Discovery Sponsor for the NBIA Disorders Association’s 3...
05/26/2026

We are honored to highlight INADCure Foundation as a Scientific Discovery Sponsor for the NBIA Disorders Association’s 30th Anniversary Celebration!

INADCure is leading the way in the development of treatments and a cure for Infantile Neuroaxonal Dystrophy (INAD) and other forms of PLA2G6-related neurodegeneration (PLAN). Their work is focused on accelerating the development of effective therapies for this devastating disorder and offering hope to families around the world.

We are grateful for INADCure’s commitment to driving research forward and for their generous support in helping us bring the NBIA community together at the 30th Anniversary Celebration Weekend.

To learn more about INADCure, check out this link: https://inadcure.org/

It’s not too late to become a sponsor. Check out this link:
https://nbiadisorders.salsalabs.org/30thAnniversarySponsorForm/index.html

Today, we wanted to shine a light on INAD Warriors, Inc. to thank them for their generous support as a Scientific Discov...
05/22/2026

Today, we wanted to shine a light on INAD Warriors, Inc. to thank them for their generous support as a Scientific Discovery Sponsor for the 30th Anniversary Celebration Weekend!

Inspired by Warner Kays’ courageous journey, the INAD Warriors, Inc. mission is to raise awareness in the global community about infantile neuroaxonal dystrophy (INAD) and the related PLA2G6 disorders. Through grassroots fundraising, we will support families who are burdened by this diagnosis and the efforts to empower the research community to find the first approved treatments to slow progression and potentially one day cure this ultra-rare disease.

More information about INAD Warriors: https://inadwarriors.org/

Thank you, INAD Warriors!

For information on sponsorship, visit: https://nbiadisorders.salsalabs.org/30thAnniversarySponsorForm/index.html

📣Attention BPAN supporters! We are excited to announce that all donations made to Team BPAN through the Million Dollar B...
05/22/2026

📣Attention BPAN supporters!

We are excited to announce that all donations made to Team BPAN through the Million Dollar Bike Ride will be matched up to $100,000 thanks to the following generous BPAN families coming together in support of this effort:

💙 Peter Pawlowski & Sherri Hansen
💙 Isabel’s Chance
💙 Maddie B’s Army
💙 Isa Elaine Foundation

There are several ways to get involved:
🚴 Ride in person on June 13 at the University of Pennsylvania campus
🚶 Participate in the Million Dollar Mile walk
🧑‍💻 Sign up as a virtual rider from anywhere
💙 Donate directly to Team BPAN

Every mile ridden, every step taken, and every dollar raised helps accelerate vital research at Stanford focused on understanding BPAN and advancing potential treatment pathways.

Learn more about the research happening at Stanford:
https://giving.lpfch.org/BPAN-Fundraising-2026-RYa4KOaDRneV

Register to ride, walk, or create your own fundraising page:
https://charity.pledgeit.org/MillionDollarBikeRide/teams/
*** Make sure to specify you are supporting Team BPAN

Donate directly to Team BPAN:
https://charity.pledgeit.org/MillionDollarBikeRide/

🚴‍♂️ Big news for Team PKAN!The NBIA Disorders Association, together with an anonymous donor, is offering a $6,200 match...
05/20/2026

🚴‍♂️ Big news for Team PKAN!

The NBIA Disorders Association, together with an anonymous donor, is offering a $6,200 matching gift for Team PKAN participating in this year’s Million Dollar Bike Ride in support of the Loving Loic Foundation.

Every donation made to Team PKAN will be matched dollar-for-dollar up to $6,200, effectively doubling the impact for gene therapy research efforts currently in development for Pantothenate Kinase-Associated Neurodegeneration (PKAN).

This is a powerful opportunity to turn support into twice the impact for families and researchers working toward treatments.

Support Team PKAN here:
https://charity.pledgeit.org/MillionDollarBikeRide/

🚴‍♂️ Exciting news for Team INAD!The NBIA Disorders Association and an anonymous donor have come together to offer a $7,...
05/19/2026

🚴‍♂️ Exciting news for Team INAD!

The NBIA Disorders Association and an anonymous donor have come together to offer a $7,500 matching gift for Team INAD participating in this year’s Million Dollar Bike Ride in support of the INADcure Foundation.

Every donation made to Team INAD will be matched dollar-for-dollar, up to $7,500, helping to double the impact and accelerate progress toward gene therapy development for Infantile Neuroaxonal Dystrophy (INAD).

This is a powerful opportunity to make your support go even further for families and for advancing treatment efforts.

Support Team INAD here: https://charity.pledgeit.org/MillionDollarBikeRide/

We are excited to recognize BridgeBio as the Journey Sponsor of the 30th Anniversary Celebration Weekend.BridgeBio is co...
05/19/2026

We are excited to recognize BridgeBio as the Journey Sponsor of the 30th Anniversary Celebration Weekend.

BridgeBio is committed to its mission of discovering, creating, testing, and delivering transformative medicines to treat patients with genetic diseases. Through their generous sponsorship, BridgeBio is helping make this important gathering possible, providing families with opportunities to learn, connect, and find hope for the future.

We are deeply grateful to BridgeBio for their outstanding support of our community and this year’s anniversary celebration.

More information about BridgeBio: https://bridgebio.com/

For information on sponsorship, visit: https://nbiadisorders.salsalabs.org/30thAnniversarySponsorForm/index.html

As our Mother’s Day campaign comes to an end, we just want to say thank you 🤍Thank you to every family member, friend, p...
05/11/2026

As our Mother’s Day campaign comes to an end, we just want to say thank you 🤍

Thank you to every family member, friend, partner, sibling, and loved one who took the time to share stories about the incredible moms in our NBIA community. Reading your words reminded us of something so powerful; behind every story, every challenge, every milestone, and every moment of advocacy, there is so often a mother carrying love in its purest form.

To all NBIA moms, thank you for your strength, your patience, your resilience, your advocacy, your sleepless nights, your sacrifices, and the endless love you pour into your families every single day. Thank you for continuing to show up, even on the hardest days.

And in many ways, this entire community exists because of a mother’s love. The very association that brings us together today was born from a mother fighting for her child and for families like ours.

We hope this campaign made you feel celebrated, appreciated, and seen, because you deserve all of that and more.

Happy Mother’s Day to all the amazing moms in our community. Today and every day, we celebrate you 🤍✨

Our last featured mom today is someone who was submitted not once, but twice! 🤍What is the name of the NBIA mother you w...
05/10/2026

Our last featured mom today is someone who was submitted not once, but twice! 🤍

What is the name of the NBIA mother you want to honor?
Halley Scott.

What is your name and relationship to the NBIA mother you are honoring?
Elaine Steele. I am her mother in law.

What does this NBIA mom like to do in her free time?
She is very active with her church.

What makes this NBIA mom laugh or smile?
Seeing the smile on her children’s faces.

If you only had one word to describe this NBIA mom, what would it be?
Incredible.

If this NBIA mom had unlimited resources and a free week with no responsibilities, what do you think she'd do?
She would be continuing to research and advocate for a cure.

Tell us about what this NBIA mom means to you and others.
She is the strongest woman I know. The way she cares and puts others before her says it all. She is such an inspiration for all moms that are raising children with disabilities. She never stops advocating for her children. I could not be more blessed to have her as my daughter in law and mother to my grandsons. Her dedication to her family is beyond words. Halley is such an amazing woman.

What else would you like to share about this NBIA mom?
She is someone that you can truly count on to help you with anything

Thank you for sharing this with us, Elaine 🤍

Happy Mother’s Day, Halley! Your love, and dedication clearly touch everyone around you ✨

Address

15055 Fairfield Meadows Drive STE 130/100
Cypress, TX
77433

Telephone

+18328356242

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