About this hub
Learn why this independent, patient-led resource exists and how it approaches accessibility, editorial quality, privacy, and transparency.
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.
Adjust larger text, stronger contrast, clearer links and controls, additional spacing, reduced motion, and a narrower reading width together. You can still change any individual setting below.
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.
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.
Privacy & disclosures
This page explains the Hub’s current browser-based features, limited anonymous usage counts, future privacy checkpoints, and important boundaries for using its information.
The NF Hub does not currently create visitor accounts, accept newsletter subscriptions, synchronize choices across devices, or save private drafts to the Hub’s servers. The newsletter preference form is a preview and does not submit or store an email address or selections.
Saved Resources, Watched Topics, saved paths, My Pulse choices, accessibility settings, reading preferences, and return locations are stored in this browser on this device. They are not an account and do not transfer to another browser or device. They can disappear if browser storage is cleared or unavailable.
Personal writing, pasted research links, tool selections, quiz progress, and practice-scenario progress may remain in the current browser session so a visitor can continue working. They are not placed in shareable URLs or permanent device storage and are not submitted to the Hub.
The Hub counts a small set of actions by date, such as page views, downloads, saved-resource actions, external-resource openings, and whether a clinic search returned no results. These counts do not include email addresses, medical records, full search text, personal writing, saved-resource titles, or Watched Topic names.
External websites, organizations, AI services, email tools, and social platforms have their own privacy practices and terms. The Hub’s prompt builders prepare text in the browser; if a visitor later pastes that text into another service, that service controls how it handles the information.
Before newsletter subscriptions, accounts, cross-device personalization, or server-side draft saving are activated, Lasting Impressions Coffee will complete a separate privacy and compliance review. That review will address applicable GDPR, CCPA/CPRA, CAN-SPAM, and other requirements; provider terms; clear notices and choices; unsubscribe handling; access, correction, and deletion requests; retention; security; and international data transfers.
Patient-Led Independent Resource Disclaimer: This website is independently created, operated, and managed by a person living with Neurofibromatosis (NF) for educational and advocacy purposes.
External Resources and Independence Disclaimer: Links and listings are provided for convenience and informational purposes. Inclusion does not constitute endorsement, certification, referral, or a guarantee of services, qualifications, availability, accuracy, safety, or outcomes. Lasting Impressions LLC is not affiliated with or responsible for external organizations, clinics, companies, websites, AI tools, or their content unless a relationship is specifically disclosed.
Medical Disclaimer: This website provides general educational and informational resources only. It is not a substitute for professional medical advice, diagnosis, or treatment and does not establish a healthcare provider-patient relationship. Always consult a qualified healthcare professional regarding medical concerns or treatment decisions. Never disregard or delay seeking professional advice because of information found on this or any website. If you may be experiencing a medical emergency, call 911 or your local emergency services.
Which requirements apply will depend on how a future feature works, where visitors are located, and which service providers are involved. This page describes current practices and is not legal advice.
Use the contact page for a privacy question, disclosure correction, or concern about information on the Hub. Do not include medical records or other private health information.
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