• Grant Call for Proposals

    The 2020 Million Dollar Bike Ride Pilot Grant Program is now open.

    More Info

  • Demystifying Research Grants:
    Deciding Where Your Money Goes

    Our webinar from 8/13/20 is now available to watch on-demand.


  • 7th International Symposium
    on NBIA & Related Disorders

    VIRTUAL CONFERENCE - Sept. 30 – Oct. 3, 2020


  • New Summer NBIA T-shirts Available!


  • Living with NBIA During the COVID-19 Pandemic

    Information, Emergency Information Form, and Webinar Recording


  • Beacon of Hope Campaign

    Please help with our Beacon of Hope campaign for family support.


  • Conference Photos & Videos

    Tenth International NBIA Disorders Association Family Conference Videos and Photos.

    View & Watch

  • 1
  • 2
  • 3
  • 4
  • 5
  • 6
  • 7


Team NBIA Disorders reaches $30,000 goal for MDBR

Matt and Josie BikingJune 2020

Team NBIA did it again! For the fourth consecutive year, the NBIA Disorders Association successfully met the goal set by the Million Dollar Bike Ride and will have $30,000 matched, dollar for dollar, by the University of Pennsylvania’s Orphan Disease Center.

The team’s efforts will result in a $60,000 grant for BPAN research to be awarded later this year. BPAN, which stands for Beta-propeller protein-associated neurodegeneration, has emerged as the most common NBIA disorder. The Million Dollar Bike Ride has been a big source of support for BPAN research, a priority of the NBIA Disorders Association, bringing in $130,000 in matching money alone from UPenn over the past three years. With this match, the BPAN grants will exceed $320,000.

Despite a global pandemic, the 7th Annual Million Dollar Bike Ride carried on. Virtually, of course. Originally set to take place in Philadelphia on June 13, this year’s ride was held in communities around the world to help rare disorders while maintaining social distancing amid COVID-19.

Read More

2019 Million Dollar Bike Ride supporting BPAN stem cell project

Lockhart Australian familiesJune 2020

Thanks to money raised in last year’s Million Dollar Bike Ride, the NBIA Disorders Association is supporting a stem cell research project in Australia that will examine BPAN’s effects on the brain and drugs that could help treat the disorder.

Dr. Paul Lockhart of Murdoch Children’s Research Institute (MCRI) in Melbourne is leading the project and received a grant in February for $60,561 from the bike ride’s sponsoring organization, the University of Pennsylvania. Of that total, the NBIA community raised $30,561 and won the maximum match of $30,000 from the school’s Orphan Disease Center to study Beta-propeller Protein-Associated Neurodegeneration (BPAN).

Our organization was deeply involved in the grant-making process. We wrote the request for proposals, and members of our Scientific & Medical Advisory Board reviewed the applications and made recommendations. The University of Pennsylvania will manage the grant and send us a copy of the final scientific report that Lockhart’s team submits.

The project is titled “Development of novel human stem cell models of BPAN for disease modeling and drug screening,” and is being conducted by the Bruce Lefroy Centre, a genetics research unit at MCRI, where Lockhart is co-director. His co-investigators are Dr. Martin Delatycki and Dr. Jay Shukla.

Read More

NBIA Disorders Association awards $45,000 for FAHN research in March

Luo Frech HermannJune 2020

The NBIA Disorders Association has awarded a $45,000 research grant to a team of German scientists studying stem cells in patients with the NBIA disorder known as FAHN.

Led by Dr. Andreas Hermann, along with Drs. Moritz Frech and Jiankai Luo of the University Medical Center Rostock, the team will create a model of FAHN, or Fatty Acid Hydroxylase-associated Neurodegeneration, in the lab, along with stem cells to better understand how the disease works. With that understanding, the researchers can advance to testing potential therapies to see whether they can reverse FAHN’s effects.

The team plans to create a supply of patient-specific induced pluripotent stem cells, which have the capacity to become any cell in the body. They can also self-renew, meaning that they divide and produce more stem cells.

Read More


Partners in Hope Monthly Giving

Ritzman family

Please consider becoming a "Partner in Hope" monthly giver.

Become a Partner in Hope

2019 Top-Rated Nonprofit Award

2019 Top-rated Nonprofit

We have been honored with one of the first Top-Rated Awards of 2019 from GreatNonprofits! We appreciate all of your contributions!

More Info

Drew and his mother walking down a hallway

NBIA Alliance

Donate Now

Connect with Us - NBIA Families and Friends

Sign-up for our Newsletter