CONNECT - SHARE - DARE TO CARE

WE

C.A.R.E.

for RARE initiative

community

advocacy

research

education

Community

  • Provide access to free, relevant and current medical and scientific research, community resources, updates on therapeutic advances and connection to our growing worldwide BPAN community through the BPANWarriors.org website and social media platforms.

  • Promote and support opportunities to connect to our international community of parents, family members, child care providers, health care providers, and other caregivers.

  • Continue to support community-based fundraising efforts through online and offline marketing, print and social media platforms. 

 

  • Design, market and distribute BPAN Warriors merchandise to support ongoing BPAN Warriors community campaigns. Campaign materials includes mailers, brochures, fact sheets, posters and online support materials.

  • Provide scholarship opportunities to travel to BPAN and Rare Disease related conferences 

In the Rare Disease Community, our collective stories, our shared experiences and the exchange of both personal, medical and scientific information is a vital cornerstone of building community. When living with a rare disease, the individual experiences, medical, social, behavioral, emotional, are the fundamental building blocks for building a support structure. The shared stories and valuable "lessons" learned are what provide direction, guidance and most importantly, HOPE to each family who are traveling the same rare disease path.  

Advocacy

  • Bring together organizations from local, regional, national and international levels —to share best practices, pool and direct resources, and identify new directions and learning opportunities, in order to improve quality of life for BPAN patients and families.

 

  • Develop and create support materials for patient families and affiliates with current science-based information about the symptoms, diagnosis, treatment, and management of symptoms and offer helpful resources.

  • Identify potential alliances with relevant disease communities and established online and offline patient support and advocacy groups.

 

 

Any potential for a cure is predicated by awareness. Our community is only as strong as the families, scientists, researchers, caregivers and supportive community members who share our stories. Without awareness, new patients may suffer years without a diagnosis, simply due to lack of information. Every BPAN Warrior Family has had the experience of walking into an office of a medical provider, only to find out that their own neurologist, epileptologist, genetic counselor has never heard of the condition. We want to change this, however it takes a village -- a TRIBE to increase awareness. 

Research

  • Coordinate advocacy, conversations, collaborations in the scientific, medical and academic arena to accelerate collaboration in research, evaluation, and outreach efforts to improve availability of BPAN information, treatment and clinical studies.

 

  • Fast-track the collection of BPAN Patient Data through a patient-driven, patient friendly, secure Database Collection system. 

 

  • Facilitate clinical research by directly engaging with patients and their advocates, creating an infrastructure to establish uniform studies for data collection, and make meaningful large-scale studies possible.

  • Actively identify research partners and new investigators via ongoing review of academic and scientific journals and collaborating with global NBIA disease community.

  • Provide access and affordability for families to participate in current/existing research. 

Research is vital to improve the lives of all patients living with BPAN. Identifying the WDR45 gene is only the beginning. Understanding how the WDR45 mutation affects individuals patients is complicated and the scientific research is often difficult to understand. Utilization of existing and potential resources in existing neurodegenerative conditions such as Alzheimer's and Parkinson's may lead to collaboration to help expedite current research and identify new and novel approaches in Gene Therapy, Epigenetics and alternative treatment paths.

Education

  • Multifaceted, public and professional education initiative that provides comprehensive research-based information focused on raising awareness of the sometimes overlooked or misdiagnosed symptoms of BPAN, with the goal of improving early detection and timely treatment. 

  • Provide both families and professionals in the community with basic information, materials and resources needed to deliver quality health care to our BPAN patient community. Through collaboration with healthcare professionals, we hope to better define BPAN-related symptoms and their underlying causes so that we may be better equipped to provide safe and effective treatment of the many physical, mental, and behavioral challenges associated with BPAN.

  • Provide a forum for reviewing, translating, and disseminating new research through a coalition of  prominent provider organizations, patient groups, and other partners. 

  • Create and share simplified copy and content of complex scientific and medical information and research.

  • Spearhead and accelerate the development of a BPAN Standard of Care, with the focus on identifying local/national/international leaders - "Champions" in BPAN patient care. 

 

  • Coordinate media strategies with multiple media outlets to push forward every campaign component via Social Media (Facebook, Twitter, blogs, etc) and Earned (articles placed in news outlets at no cost).

Providing patient families the essential tools to decipher complex data will facilitate how current research in BPAN and related diseases and neurodegenerative conditions allow families to make informed decision. Raising a child with special needs and especially medical needs can requires an extra set of "tools" to meet the varied and often complex, individual needs of each BPAN Warrior.  We understand that this process can be overwhelming and we want to help. Our goal is to provide a community resource bank to assist you with the daily care of each BPAN Warrior.

 

 

Until the day we find a cure, learning from each other and sharing knowledge is essential to help improve the quality of lives for all our BPAN Warriors. 

CONNECT - SHARE - DARE TO CARE

we

C.A.R.E.

for RARE initiative

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BPAN Warriors is a not-for-profit 501(c)(3) organization. Donations are tax-deductible.

Our Federal Tax ID number is 82-3976283.