About this hub
Learn why this independent, patient-led resource exists and how it approaches accessibility and editorial quality.
About
This independent, patient-led hub brings NF information, practical tools, and community resources into one clearer starting place.
I’m Aaron Wickersham, and I live with NF1. After a lifetime of navigating NF care, clinical trials, research, advocacy, and community connections, I created this hub to bring practical information together in one clearer starting place.
The goal is to reduce the time and confusion involved in finding trustworthy research, care resources, organizations, events, news, and self-advocacy tools—while helping people verify important details at the original source.
This is a project of Lasting Impressions Coffee, independently created and maintained for people living with NF, families, caregivers, advocates, and allies.
It is not an NF organization, clinic, medical provider, law firm, or substitute for professional medical or legal advice. A listing is not an endorsement, referral, or guarantee.
Although the Hub includes international organizations and resources, several practical care-support tools—especially state-specific benefits, cost, travel, and lodging finders—are currently focused on the United States.
The NF Hub is part of Lasting Impressions Coffee’s broader work to support NF awareness, connection, and advocacy. A portion of proceeds benefits the Children’s Tumor Foundation and NF research.
Follow the automatically updated total toward the $10,000 goal.
Accessibility
The hub is designed to support different devices, input methods, reading preferences, and formats.
Display and reading preferences
Choose any settings that make the hub easier to read or use. Settings are saved only in this browser on this device.
Accessibility preferences are ready. Changes apply immediately and are saved only in this browser on this device.
Use your browser or device’s built-in speech feature to read the currently open section aloud. This does not use an AI API.
Reader is ready.
Most educational content can be printed directly from the page. Downloadable Portable Document Format (PDF) files are provided for structured tools and checklists.
If a resource is difficult to access, use the correction link below and identify the affected page or download. Do not include medical records or private health information.
Editorial standards
Selections favor reliable original sources, clear labeling, practical relevance, and transparency about what may change or remain uncertain.
Major datasets are reviewed as collections. Automated sources are checked on recurring schedules, while sources without reliable feeds require manual review.
Broken links, changed listings, expired events, inaccessible downloads, and factual corrections can be reported through the site’s correction link.
External information, staffing, eligibility, schedules, registration, and availability can change between reviews. Automated imports can miss relevant material or retrieve an imperfect match. Important details should be confirmed with the original source.
The saved-resource list and information entered into interactive forms operate only in the current browser tab. They do not create an account or store selections on this website.
Anonymous action counts may be used to understand whether tools are useful. Medical information and full health-related search text should not be collected for analytics.
If you find an outdated clinic, changed organization listing, expired event, broken link, inaccessible download, or factual error, please send a correction. Include the page and item involved, but do not send medical records or private health information.
