THE SCIENCE BEHIND BPAN

OREGON HEALTH & SCIENCE UNIVERSITY - NBIACURE.COM LEADING THE WAY IN NBIA AND BPAN RESEARCH:

A leader in NBIA and BPAN research, Oregon Health & Science University (OHSU) and their dedicated  research team have been at the forefront of NBIA research for the past two decades. Their research led to the discovery of PANK2 gene in 2001 and eventually to three other NBIA genes including the discovery of the WDR45 gene in 2012, the gene which causes BPAN. Today their research team, led, by Dr. Susan Hayflick and Dr. Penelope Hogarth, continue to advance research, develop best practices and provide critical scientific research for the NBIA community, with the hope that they may identify advances for the treatment of NBIA conditions and one day find a cure for BPAN.

Dr. Penelope Hogarth was recently awarded a $50,507 grant through The Orphan Disease Center funded by proceeds from the 2017 Million Dollar Bike Ride. This grant will be used for the continuation of a BPAN Natural Histories Study which is set to roll-out in 2018. Stay tuned for more information. Your participation is vital to the success of the study.

To learn more about OHSU and the NBIACure Research Team please visit:

http://nbiacure.org/

SUPPORT RESEARCH

The link below will take you to the OHSU Foundation, where you can make a gift to support NBIA research

From the Lab to the Clinic: An Update on Research & Therapeutics

Current Projects

  • Building the patient and family registry

  • Developing assays to measure autophagy in BPAN

  • Testing an FDA-approved drug in those assays

  • Finding ways to measure BPAN

  • Figuring out how to pay for it all

 

Lessons learned

  • Families are central

  • Power is in numbers

  • Collaboration is key

  • Funding is inadequate

  • Time is of the essence

 

International Symposium on NBIA & Related Disorders

Meeting Highlights Include:

  • Discovery updates on the NBIA disorders

  • Advances in therapeutics for NBIA

  • Poster sessions and round table discussions

 

BPAN: Then and Now Presentation

BPAN overview presentation by Allison Gregory, MS, CGC