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Our organization always appreciates the generosity and involvement of people like you, with every contribution going towards fulfilling BPAN Warriors' Mission.
To fulfill its mission, BPAN Warriors is currently establishing a Research and Collaborative Exchange, BPAN RACE, to facilitate and coordinate interest, research studies, and transparency among researchers, clinicians, patient families, and other stakeholders interested in BPAN and rare disease. All BPAN Warrior efforts are conducted within the framework of the BPAN RACE.
Goals for 2020 include:
Maintain an active Scientific Medical Advisory Board
Create and utilize a comprehensive contact directory to best communicate with patient families.
Engage researchers and clinicians to join and participate in the BPAN RACE.
Facilitate research projects to establish clinical care guidelines and accelerate treatments to improve patient quality of life.
ISOFORM AND ALTERNATIVE SPLICING ANALYSIS
Validate bio-informatics study of WDR45 WIPI4 protein isoforms (structurally similar protein expressions from the same gene)
Identify the isoform(s) that performs critical function or have highest protein expression
Essential first step for gene replacement therapy
G-CSF GENE THERAPY AND PROTEIN INFUSION THERAPY
The FAU G-CSF Gene Therapy Project will test a ground-breaking approach to treating BPAN. While it is not the "cure", G-CSF Gene Therapy has the potential to provide neuroprotection, stimulate cell growth of new neurons, improve mitochondrial function, reduce endoplasmic reticulum stress, and provide neuronal homeostasis. It has also shown improvement in cognitive function and motor skills in Parkinson's, Alzheimer’s and ischemic stroke mouse models.
BPAN Warriors is working in collaboration with multiple rare disease organizations to co-fund a Neurogenetics Fellowship at Children's Hospital Colorado.
Treatment and management of neurologic disease including epilepsy, movement disorders, developmental delay, ataxia and cortical visual impairment.
International Foundation for CDKL5 Research, Ring14, Syngap Research Fund, and more.
OUR RESEARCH FUNDING PHILOSOPHY
PATIENT DRIVEN RESEARCH: ABANDONING OLD FUNDING MODELS
For decades, small, non-profit disease research organizations like BPAN Warriors have modeled their funding structures after the National Institutes of Health (NIH) where they budget their research dollars, put out a once-a-year call for applications, wait for scientists to come to them with ideas, select the most promising applications and hope they actually see results.
BPAN Warriors is not at all interested in this slow, linear approach to research and instead has chosen to adopt a high-risk/high-reward research program that will ensure promising therapeutics make it from the laboratory bench to the patient’s bedside as quickly as possible.
Adopting a business model where we have input and control over the direction of the research, BPAN Warriors is working to assemble an in-house team of experts in science, medicine, business management, finance, law, accounting and technology. In addition to funding research grants, BPAN Warriors is focused on targeted projects with well defined milestones and deliverables.
The study of autophagy and its impact in human diseases beyond BPAN has lead to thousands of publications throughout the last several years. Impaired autophagy and the implication that targeted therapy may hold in the treatment of many rare and common neurodegenerative diseases including Parkinson's, Alzheimer's, ischemic stroke, Huntington's and other diseases such as cancer, has made the study of BPAN, a monogenetic (single gene) disease, currently one of the most promising fields of scientific research.
We cannot rely solely on investigator-initiated research to identify and implement patient treatments. Within the rare disease community, countless stories have been told of PARENT and PATIENT LEAD RESEARCH that has brought great advances in gene therapy and the treatment of rare diseases for which there were previously no treatments - no cures - no hope. Reliance upon investigator-initiated research is inefficient and short sighted.
Additionally, true collaboration of researchers working cooperatively is the only successful approach to treatment science. It is not about how much you spend, but rather how you spend it. BPAN Warrior's mission is to fund smarter, faster science and with proper funding, a cure is within our reach.
OTHER WAYS YOU CAN DONATE AND SUPPORT BPAN WARRIORS
ACCELERATING RESEARCH THROUGH COMMUNITY COLLABORATION
OTHERS WAYS TO DONATE TO BPAN WARRIORS
DONATE VIA FACEBOOK:
Facebook charges no fees for donations to nonprofits. 100% of donations made through Facebook will be passed through to BPAN Warriors. All financial donations made in support of BPANWarriors.org are tax-deductible to the extent permitted by law.
DONATE VIA PAYPAL:
As a charity, BPAN Warriors qualifies for a special discount rate of 2.2% + $0.30 USD on online transactions.
COMPANY MATCHING PLATFORMS:
Network for Good
350 NE 28th Road
Boca Raton, Florida 33431
EIN: 82-3976283 | Boca Raton, FL, United States
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