Hannah's Journey of Hope - BPAN Research Fundraising

Sepideh Nia‎ - hannah, Age 5

Hannah's Journey of Hope - BPAN Research Fundraising
Our daughter, Hannah, is diagnosed with the BPAN variation of NBIA (Neuro-degeneration with Brain Iron Accumulation), an extremely rare degenerative and life threatening disease with no treatment or cure.

Hannah continues to suffer from seizures, display severe developmental delay and intellectual disability, and significant difficulty communicating. Others like her have entered into a second phase of rapid neurological deterioration characterized by parkinsonism and dementia in their teens, and their lives have been shortened as a result 

There are researchers across the globe working to understand this horrible disease with the hope of identifying possible treatment, and finding a cure. They need our help! By donating to the NBIA Disorder Association for Hannah, you can help raise the money we need to make critical progress. Remember, RESEARCH = HOPE!

Your donation truly makes a difference. NBIA Disorders Association does not receive any US government funding, and therefore relies on the generosity of individuals, corporations, organizations, and foundations to support their research, programs, and services. We are very grateful for any donation, no matter how big or small, to help us find a cure for this devastating rare disease.

Thank you, thank you, thank you for your support. Please forward this link to anyone who you think might want to help with this important cause. We are so fortunate to have the support, love, and prayers of our friends and family.
Please mention BPAN in notes section while donating on This page. 

Firstgiving page:



The NBIA Disorders Association page uses PayPal. Just please mention BPAN in the notes section Or you can email info@nbiadisorders.org for clarification.


With love,

Hannah, Sepideh, Daniel and Nick