NBIA Disorders Association

09/06/2026

📣 Indianapolis, this invitation is for you!

Do you have a family member, friend or loved one living with an NBIA disorder? Are you a clinician, researcher, advocate or supporter who cares about rare disease?

We’d love to welcome you to the NBIA Disorders Association’s 30th Anniversary Celebration on Saturday, Sept. 26!

Join us at the Biltwell Event Center for an evening of dinner, special presentations, a silent and live auction, dancing and celebration as we mark 30 years of bringing the NBIA community together.

📅 Sept. 26 | 5–11 p.m.
📍 Biltwell Event Center
🎟️ $100
🥂 Cocktail attire

This celebration is open to the community. If you’re in Indianapolis or the surrounding area, we hope you’ll come celebrate with us and show your support for families affected by NBIA.

We’d love to see you there! 💙

Register: NBIAdisorders.org/celebration

09/04/2026

✨ It’s more than a celebration — it’s a night to remember!

Join us in Indianapolis on Sept. 26 as we celebrate 30 years of the NBIA Disorders Association and the incredible community that has made this journey possible.

Your evening at the Biltwell Event Center will include:

🥂 Cocktail reception
🍽️ Dinner
🎤 Special presentations
🎟️ Silent and live auction
💃 Dancing
💙 Time with the NBIA community

Saturday, Sept. 26 | 5–11 p.m.
Biltwell Event Center | $100 | Open to the community

Whether you’ve been part of the NBIA community for decades or are joining us for the first time, we’d love to celebrate with you!

Registration for Saturday night is still open. NBIAdisorders.org/celebration

09/03/2026

In 2002, the hope shared at the second International HSSA Family Conference crossed borders, inspiring the Klucken family to establish Hoffnungsbaum e.V. in Germany.

One year later, HSS became known as NBIA, and HSSA became the NBIA Disorders Association, adopting the new tagline “From Discovery to Cure.” 🌍💙

Together, these milestones showed how strong roots could inspire new growth around the world and lead our community toward new horizons.

09/02/2026

📣 Indianapolis — this celebration is for you, too!

Our 30th Anniversary Celebration is open to the community, and we’d love to fill the Biltwell Event Center with friends, families, supporters and advocates from Indianapolis and beyond.

Join us for an evening of dinner, special presentations, a silent and live auction, dancing and celebrating 30 years of the NBIA Disorders Association. 💙

📅 Saturday, Sept. 26
⏰ 5–11 p.m.
📍 Biltwell Event Center
🎟️ $100
🥂 Cocktail attire

If you support someone living with an NBIA disorder, this is a wonderful opportunity to celebrate alongside the community and help us look toward the future.

Registration is still open — we hope you’ll join us!

NBIAdisorders.org/celebration

08/31/2026

📣 Indianapolis friends — you’re invited!

Our 30th Anniversary Celebration is open to the community, and we’d love to celebrate this special milestone with you! 💙

If you live in the Indianapolis area and support a loved one living with an NBIA disorder, we hope you’ll join us for an unforgettable evening celebrating 30 years of the NBIA Disorders Association.

📅 Saturday, Sept. 26
⏰ 5–11 p.m.
📍 Biltwell Event Center
🎟️ Registration: $100
🥂 Cocktail attire

Enjoy an evening featuring special presentations, dinner, a silent and live auction, dancing and time to celebrate with friends old and new.

This milestone is about the people who have helped carry the NBIA community forward over the past 30 years — and the bright future we’re building together.

Whether NBIA is part of your family’s story or you simply want to support the work we’re doing, we’d love to have you with us!

Come celebrate 30 years of Strong Roots and Bright Horizons in Indianapolis. We hope to see you there! 💙

Register here: nbiadisorders.org/celebration

08/28/2026

Thank you to Duets Across America for your incredible support of the 2026 Million Dollar Bike Ride! 💜💙🩵

We're so grateful to the Wyman family and Duets Across America for their generous gift supporting research into BPAN (beta-propeller protein-associated neurodegeneration), a rare neurological condition that affects Duet, the youngest Wyman.💙 During a recent visit, the family toured the lab of Dr. Juliet Knowles, whose work is helping advance treatment for this complex condition. Of the $50,000 raised, $25,000 came directly through Duets Across America, with an additional $25,000 contributed by Million Dollar Bike Ride matching donors.

Duet's family founded Duets Across America to raise awareness and funds for BPAN research, and their support of NBIA Disorders Association is fueling a collaboration with Stanford School of Medicine to move Dr. Knowles' research forward. Thank you for making a difference for kids and families affected by BPAN.

08/28/2026

Congratulations to INAD Warriors Inc. and their incredible show of support for the INAD community! 🩵💙 We are grateful for your partnership!

INAD Warriors' 4th Annual "Dancing with the INAD Stars" Gala. INAD Warriors' 4th Annual "Dancing with the INAD Stars" Gala Raises More Than $219,000 to Advance Gene Therapy Research - PR13167415

08/23/2026

LAST DAY TO REGISTER AND BOOK YOUR ROOM!

🚨 TONIGHT IS THE DEADLINE!

Today is the last day to register for NBIA Disorders Association’s 30th Anniversary Celebration Weekend in Indianapolis!

Join us Sept. 26-27 for a special weekend celebrating 30 years of NBIA Disorders Association and the people who have made this journey possible.

If you’re planning to attend, make sure you register by the end of the day today.

🏨 Need a hotel room? The special $149/night room rate is also only available through our room block, which closes at the end of the day.

Registration and room block closes tonight!

👉 registration.nbiadisorders.org

We hope you’ll be there to celebrate 30 years of Strong Roots and Bright Horizons with us!

08/22/2026

2 DAYS TO GO!

⏰ Just 2 days left!

If you’ve been meaning to register for NBIA Disorders Association’s 30th Anniversary Celebration Weekend, now is the time.

Join us in Indianapolis Sept. 26-27 as we celebrate 30 years of NBIA Disorders Association and the incredible community that has helped shape where we are today.

And if you need a hotel room, don’t forget to reserve it through our room block. The special rate is $149/night and the room block closes Aug. 23.

Registration closes Aug. 23 too.

👉 Register and book your room: registration.nbiadisorders.org

We’d love to celebrate this milestone with you!

08/21/2026

3 DAYS TO GO!

The deadline is getting close!

You have just 3 days left to register for NBIA Disorders Association’s 30th Anniversary Celebration Weekend in Indianapolis Sept. 26-27.

Come celebrate 30 years of NBIA Disorders Association and spend the weekend with the families, clinicians, researchers and friends who make this community so special.

🏨 Staying at the hotel? Our special $149/night room rate is available through the room block, but the block closes Aug. 23.

Registration and the room block both close Aug. 23.

👉 registration.nbiadisorders.org

We hope to see you there!