# LHON Collective

> LHON Collective is a global nonprofit (501(c)(3)) dedicated to accelerating progress toward a cure for Leber Hereditary Optic Neuropathy (LHON) — a rare, maternally-inherited mitochondrial disorder that causes sudden, painless central vision loss — while supporting affected individuals, carriers, and their families through education, community, and research.

LHON typically causes rapid loss of central vision, first in one eye, then the other. This site provides medically reviewed information on the condition, guidance for the newly diagnosed, resources for daily living with vision loss, ways to connect with the community, and information on research that the organization funds.

## Understanding LHON

- [What is LHON](https://www.lhon.org/what-is-lhon): LHON is a rare genetic disorder. Symptoms usually begin as a sudden, painless, profound loss of central vision first in one eye, then the other, causing legal blindness in just months.
- [LHON Defined](https://www.lhon.org/lhon-defined): LHON is a rare genetic disorder. Symptoms usually begin as a sudden, painless, profound loss of central vision first in one eye, then the other, causing legal blindness in just months.
- [Explaining LHON](https://www.lhon.org/explaining-lhon): Leber Hereditary Optic Neuropathy is usually referred to by its initials, “L-H-O-N.” It is also referred to simply as “Leber’s” (pronounced LAY-ber). With LHON, the eyes are working fine; the problem is with the optic nerves, which transmit information between the eye and the brain, so glasses are not helpful, and no operation is possible. It’s like a TV cord that’s become frayed so the signal doesn’t work. Since optic nerve cells can’t regenerate, the “cord” can’t be fixed.
- [Cause of LHON](https://www.lhon.org/cause-lhon): LHON is a mitochondrial disease usually caused by one of several genetic mutations in the mitochondria.
- [Maternal Bloodline Inheritance](https://www.lhon.org/maternal-bloodline-inheritance): An LHON diagnosis affects the entire maternal bloodline, making family communication, awareness of risk factors, and early recognition of vision loss essential to prevention, timely care, and informed planning.
- [Factors Impact the Risk of Becoming Affected](https://www.lhon.org/factors-impact-the-risk-of-affected): Most LHON experts suggest that people carrying an LHON mutation, both affected and unaffected carriers, avoid environmental factors that could create additional mitochondrial stress including all smoke, antimicrobials, antibiotics, and quaternary ammonium compounds.
- [Demographics](https://www.lhon.org/demographics): About 100 people in the U.S. experience onset of LHON vision loss each year, joining the 4,000 or so in the U.S. who are already legally blind due to LHON. Thousands more are unaffected carriers of an LHON genetic mutation and could suddenly become affected by LHON vision loss at any time.

## New to LHON & Diagnosis

- [New to LHON](https://www.lhon.org/new-to-lhon): The journey to an LHON diagnosis can be long and frustrating. LHON Collective provides info on getting a diagnosis, genetic counseling and testing,
- [Welcome](https://www.lhon.org/welcome): A warm WELCOME to those new to LHON. Check out some ways you can get involved and make a difference right away.
- [Getting to a LHON Diagnosis](https://www.lhon.org/getting-to-a-diagnosis): Because LHON is rare and often unfamiliar to clinicians, diagnosis is frequently delayed by misdirected referrals and lengthy genetic testing, making early neuro-ophthalmic evaluation and patient advocacy critical.
- [Diagnosis of LHON](https://www.lhon.org/diagnosis): Sudden, painless central vision loss from LHON is often misdiagnosed due to its rarity, leading to delays as other conditions are ruled out before genetic testing and neuro-ophthalmic evaluation confirm LHON.
- [Genetic Testing](https://www.lhon.org/genetic-testing): Genetic testing confirms LHON mutations, with options ranging from common-mutation panels to full mitochondrial genome testing, and faster, lower-cost targeted tests available for known familial mutations.
- [Genetic Counseling](https://www.lhon.org/genetic-counseling): Genetic counselors play a key role in LHON care by guiding genetic testing, explaining results, supporting family communication and planning, and helping relatives decide about testing.
- [LHON Carrier Checklist](https://www.lhon.org/lhon-carrier-checklist): Onset of vision loss happens quickly. If it does, there will be many issues to address and obstacles to overcome all at once, and it will be overwhelming. Preparation makes onset less traumatic.
- [Treatments to Consider - Those to Avoid](https://www.lhon.org/treatments-to-consider-those-to-avoid): Once diagnosed, it’s good to discuss with your medical professional if there are any legitimate clinical trials underway for which you may be eligible, or if taking specific supplements would be appropriate for you.
- [Patient Care](https://www.lhon.org/patient-care): It’s helpful to find a medical professional who is aware of the most current research about LHON. The condition is so rare that most medical professionals are not up-to-date on recent developments.
- [Proactive Considerations](https://www.lhon.org/proactive-considerations): Some research indicates that some individuals with an LHON mutation may be more likely to have low B12 than the general population. It may be worthwhile to discuss with your healthcare provider the possibility of a simple blood test to determine if your level is out of range, and to explore potential treatment options to bring it into range.

## Living with LHON

- [Living with LHON](https://www.lhon.org/living-with-lhon): Living with LHON, resources to help you adapt.
- [Adjusting to LHON](https://www.lhon.org/adjusting-to-lhon): Educating others and advocating for the needs created by LHON are a constant part of the journey for those affected and their supporters.
- [Emotions](https://www.lhon.org/emotions): An individual affected by LHON and their sighted supporters must deal with shock and grief at the same time as they are striving to adjust to rapidly diminishing vision. All involved can benefit from speaking with a counselor, therapist, or psychologist to work through the grief, fear, and anxiety the sudden loss of vision can produce.
- [Assistive Technology](https://www.lhon.org/assistive-technology): A wide range of assistive technologies can support people with LHON vision loss, from magnification and screen readers to AI-powered glasses, with careful selection needed to match individual needs and stability of vision.
- [Education](https://www.lhon.org/education): Students with LHON vision loss can access school and college accommodations through vision specialists, disability services, and community or vocational rehabilitation programs to support a sudden transition to visual impairment
- [Employment](https://www.lhon.org/employment): People with LHON vision loss can often continue working by adapting their roles, using workplace accommodations, and understanding their rights under the ADA, with resources available to support employment decisions.
- [Navigating Employment](https://www.lhon.org/navigating-employment): More info on first steps and actions to take when navigating employment when affected by LHON.
- [Vocational Rehabilitation](https://www.lhon.org/vocational-rehabilitation): State vocational rehabilitation programs help adults with LHON vision loss stay employed or return to work by providing job training, adaptive skills, assistive technology, and workplace accommodations.
- [Financial Matters](https://www.lhon.org/financial-matters): Financial guides for the LHON community outline Social Security benefits, Medicare eligibility, and the importance of long-term disability insurance in helping to manage financial challenges related to vision loss.
- [Mobility, Transportation, and Home Modifications](https://www.lhon.org/mobility-transportation-and-home-modifications): LHON vision loss affects mobility and transportation, making orientation and mobility training, early driving cessation, accessible transit options, assistive apps, and simple home adaptations essential for safety and independence.
- [Travel and Leisure](https://www.lhon.org/travel-and-leisure): People with LHON vision loss can access travel benefits, free digital books, audio news, audio-described movies, and sound-based games through various accessible services and programs.
- [Sports and Fitness](https://www.lhon.org/sports-and-fitness): Many sports and fitness activities can be done successfully with LHON vision. People affected by LHON also play sports when their teammates and coaches are willing to work with them.
- [Lifestyle Choices](https://www.lhon.org/lifestyle-choices): People affected by LHON should continue to avoid environmental factors that stress the mitochondria, giving the remaining optic nerve fibers that provide peripheral vision the best chance of surviving throughout one’s lifetime. Living as healthy a life as possible is usually recommended by medical professionals who understand LHON.
- [Other Vision Issues](https://www.lhon.org/other-vision-issues): LHON vision loss may include phantom images (Charles Bonnet Syndrome), light sensitivity, and temporary worsening with heat or exercise, making regular eye exams essential to protect remaining vision.
- [Vision Loss-Related Resources and Organizations](https://www.lhon.org/vision-loss-related-resources-and-organizations): Finding LHON-specific vision loss resources, including blogs and podcasts by those affected, can provide more relevant guidance and support than general blind services tailored to other age groups.

## Associated Conditions (LHON Plus)

- [LHON Plus & Non-Vision Symptoms](https://www.lhon.org/lhon-plus-non-vision-symptoms): Most people with an LHON mutation have no symptoms beyond vision loss, but a rare subset experience additional neurological or systemic symptoms known as LHON Plus or LHON Spectrum Disorder.
- [LHON & Cardiac Issues](https://www.lhon.org/lhon-cardiac-issues): LHON is a mitochondrial disease affecting cellular energy, primarily causing vision loss but potentially increasing the risk of heart rhythm or muscle issues, making baseline cardiac evaluation advisable.
- [LHON & Migraine](https://www.lhon.org/lhon-migraine): Migraine is common in people with an LHON mutation, with research suggesting a possible link between mitochondrial disease and migraine, and multiple treatment and prevention options available.
- [LHON & Charles Bonnet Syndrome](https://www.lhon.org/lhon-charles-bonnet-syndrome): Charles Bonnet Syndrome is common in people with LHON vision loss, causing phantom images or visual hallucinations that result from the brain’s response to reduced vision and are often misunderstood or undisclosed.
- [LHON & Vitamin B12 Deficiency](https://www.lhon.org/lhon-vitamin-b12-deficiency): Some research suggests that individuals with an LHON mutation may be more likely to have low B12 levels than the general population. Therefore, it may be beneficial to share info in the B12 handout with one’s physician.

## Community

- [LHON Community](https://www.lhon.org/lhon-community): Join the LHON Community to connect and thrive. Discover LHON Community Connections for support and growth in our action-driven group.
- [LHON Community Updates](https://www.lhon.org/lhon-community-updates): Check out recordings of LHON Community updates presented at LHON Conferences.
- [LHON Social Media Groups](https://www.lhon.org/lhon-social-media-groups): Because LHON is rare and isolating, global and specialized LHON Facebook groups help connect affected individuals, carriers, and supporters to share information, experiences, and support.
- [LHON Connect Zoom Events](https://www.lhon.org/lhon-connect-zoom-events): The LHON community hosts many Zoom events each month, ranging from LHON Live!, connecting the community together across the world and many other Zoom events to connect people based on common attributes, interests, or location.
- [Zoom Event Leaders](https://www.lhon.org/zoomeventleaders): Meet current volunteer leaders of LHON Connect Zoom events. Select any name to open a window on this page where you can read their bio and inspiration for leading an LHON Connect Zoom event.
- [LHON Calendar of Events](https://www.lhon.org/lhon-calendar-of-events): Check out upcoming LHON Zoom events, webinars, and conferences.
- [LHON Conferences](https://www.lhon.org/lhon-conferences): Save the Date! Mark your calendar and plan to join the dynamic and supportive LHON community in San Diego April 30 - May 2, 2027.
- [LHON Global Organizations](https://www.lhon.org/lhon-global-organizations): There are LHON organizations in various locations around the world. All are committed to improving the lives of people affected by LHON.
- [Mitochondrial and Rare Disease Organizations](https://www.lhon.org/mitochondrial-and-rare-disease-organizations): Check out mitochondrial and rare disease organizations associated with LHON.
- [Collaborations](https://www.lhon.org/collaborations): Check out different organizations we collaborate with: CombinedBrain, Global Genes, Notre Dame Boler-Parseghian Center for Rare Diseases, RARE-X Data Collection Program
- [LHON Media Stories](https://www.lhon.org/lhon-media-stories): Many individuals affected by LHON have been featured in the news via TV shows, videos, and articles. Check out stories from newly diagnosed, sighted supporteers, fundraisers, veterans, and people in sports and fitness.
- [LHON Journey Videos](https://www.lhon.org/lhon-journey-videos): For each person whose life is impacted by LHON, their LHON journey is individual and different. Check out stories from our community that give a greater understanding and a feeling of connectivity through shared, similar experiences.
- [LHON Videos, Blogs, and Books](https://www.lhon.org/lhon-videos-blogs-and-books): Several people in the community have shared their LHON journeys in videos, blogs, and books.

## Get Involved

- [Get Involved](https://www.lhon.org/get-involved): Find your place with our LHON Community,
- [Volunteer](https://www.lhon.org/volunteer): We’re always looking for people to volunteer their time and talent toward fulfilling our mission of supporting the LHON community while working to promote the science towards a cure. LHON Collective depends on and values the commitment, creativity, talent, and energy of our volunteers.
- [LHON Collective Volunteer Roles](https://www.lhon.org/lhon-collective-volunteer-roles): Looking for ways to get involved with and support LHON Collective? We are looking for additional help in communications and media, community outreach and engagement, and fundraising...
- [Register in the Contact List](https://www.lhon.org/register-in-the-contact-list): Regardless of how you are connected to LHON, we encourage you to register in our Contact List. Your information will be used to communicate research and clinical trial opportunities, to share educational and advocacy resources, as well as to help families connect with each other.
- [Participate in the LHON Medical Registry](https://www.lhon.org/participate-in-the-lhon-medical-registry): If you are an unaffected or affected carrier of an LHON mutation, please consider joining our secure global registry with RARE-X to grow the LHON patient participants, which will encourage research on this rare disease. Learn more and register at LHON.rarex.org

## Fundraising

- [Fundraise for LHON](https://www.lhon.org/fundraise-for-lhon): Help us fund research and support for LHON. It takes us all working together to raise funds for cutting-edge science to benefit LHON. All donations help us support those affected by LHON and get us closer to a cure for our rare disease.
- [Host Your Own Personal Fundraiser](https://www.lhon.org/host-your-own-personal-fundraiser): Plan a walk, run, dinner, bake sale, lemonade stand, golf outing, etc…there are many, many possibilities. Think of what you love to do, and create a fundraiser around it! We will help to support you in creating a successful and impactful event.
- [Explore Fundraising Ideas](https://www.lhon.org/explore-fundraising-ideas): With your creativity, passion and connections, you can help raise awareness for the work of LHON Collective and help fund our research to find meaningful treatments and cures.
- [Fundraise with Facebook](https://www.lhon.org/fundraise-with-facebook): Learn how to celebrate a holiday, birthday, or “just because” with a Facebook fundraisers.
- [Create Customizable LHON Items](https://www.lhon.org/create-customizable-lhon-items): Use Bonfire as an easy way to fundraise either as part of an event or for directly raising much needed funding for research. Simply use a pre-approved design by LHON Collective and customize with your team name. When your campaign has ended, Bonfire will ship the shirts directly to your supporters and send the funds raised to LHON Collective.
- [LHON Collective Fundraising Toolkit](https://www.lhon.org/lhon-collective-fundraising-toolkit): Before you host your fundraiser, take the opportunity to share your story, invite friends and family to join your fundraising efforts, and raise awareness for LHON Collective.
- [Fundraising How To Guides](https://www.lhon.org/lhon-fundraising-how-to-guides): How to guides for various types of LHON Collective fundraisers.
- [LHON Fundraising Guidelines](https://www.lhon.org/lhon-fundraising-guidelines): LHON Collective is extremely grateful to the many individuals and organizations who wish to organize events and campaigns to support the LHON Community and research towards a cure for LHON.
- [Sponsorship Opportunities](https://www.lhon.org/sponsorship-opportunities): The 2027 conference provides critical education, access to experts, and community support for people living with LHON. Sponsorships are essential to bringing this event to life. Here are several ways to get involved.

## Research

- [Research](https://www.lhon.org/research): LHON Collective will best inform and serve those diagnosed and move the science forward.
- [Driving LHON Research Forward](https://www.lhon.org/driving-lhon-research-forward): The "Research Resource Working Group" and initiatives define our research priorities and steps towards the goal of finding a cure for LHON.
- [LHON Research Resources](https://www.lhon.org/lhon-research-resources): LHON Collective has partnered with the Milken Institute Science Philanthropy Accelerator for Research and Collaboration (SPARC) to develop, launch, and lead initiatives that propel scientific and medical research. Together we are strategically identifying investments that will accelerate the development of tools and treatments to cure LHON.
- [LHON Opportunity Map](https://www.lhon.org/lhon-opportunity-map): LHON Opportunity Map identifies four high-priority philanthropic opportunities to pursue to most effectively move the science forward for LHON.
- [LHON Opportunity 1](https://www.lhon.org/lhon-opportunity-1): LHON Opportunity 1: Collect natural history data and biological samples in open-access repositories.
- [LHON Opportunity 2](https://www.lhon.org/lhon-opportunity-2): LHON Opportunity 2: Develop research tools for the field, beginning with models.
- [LHON Opportunity 3](https://www.lhon.org/lhon-opportunity-3): LHON Opportunity 3: fund basic discovery and drug repurposing researching to advance the therapeutic dev pipeline.
- [LHON Opportunity 4](https://www.lhon.org/lhon-opportunity-4): LHON Opportunity 4: Invest in platform tools and tech to align with other diseases and raise awareness of LHON.
- [LHON Opportunity - Next Steps](https://www.lhon.org/lhon-opportunity-next-steps): LHON Opportunities, conclusion and next steps.
- [LHON Data Collection Program Tips](https://www.lhon.org/lhon-data-collection-program-tips): FAQ

## Ways to Give

- [Ways to Give](https://www.lhon.org/ways-to-give): Join us in the discovery of prevention, support, and cure for Leber Hereditary Optic Neuropathy (LHON). Your generosity has the power to make a lasting impact on the lives of those impacted by LHON. With a variety of giving options, you can choose the way that resonates most with you and helps advance research, treatments, and support for LHON patients worldwide.
- [Ways to Give Details](https://www.lhon.org/ways-to-give-details): Details and instructions on ways to give to LHON Collective.

## About LHON Collective

- [About LHON Collective](https://www.lhon.org/about-us): LHON Collective is a global initiative dedicated to accelerating progress toward a cure for Leber Hereditary Optic Neuropathy (LHON) while improving the lives of people living with LHON.
- [Our Team](https://www.lhon.org/our-team): Please meet current volunteer leaders of LHON Collective. We are all honored to serve this organization and dedicated to working together to fulfill its mission.
- [History of LHON Collective](https://www.lhon.org/history-lhon-collective): LHON Collective is a global initiative dedicated to accelerating progress toward a cure for Leber Hereditary Optic Neuropathy (LHON) while improving the lives of people living with LHON.
- [Financials & Transparency](https://www.lhon.org/financials-transparency): LHON Collective values transparency and accountability in all we do. We are a volunteer-run 501(c)(3) organization and incur minimum operating expenses. This enables LHON Collective to maximize our donor contributions toward our goals of supporting the LHON community and accelerating treatments toward a cure for LHON.

## Optional

- [LHON Policy Center](https://www.lhon.org/policycenter): The LHON Collective Policy Center makes it easy to find information on policy topics, including Fundraising Policies and Guidelines, Non-discrimination Policies, Terms of Use, and Code of Conduct.
- [LHON Privacy Center](https://www.lhon.org/privacy): The LHON Collective Privacy Center makes it easy to find information on privacy topics, including your choices about how we collect and use your information.
- [Privacy Policy](https://www.lhon.org/privacypolicy): LHON Collective Privacy Policy
- [General Terms of Use](https://www.lhon.org/general-terms-of-use): LHON Collective General Terms of Use

## AI Agent Access

This site is powered by Wix and supports the Model Context Protocol (MCP)
for agentic AI access. AI agents can connect directly to retrieve live,
up-to-date site content - no scraping required.

- [**Site MCP Endpoint**](https://www.lhon.org/_api/mcp)
- [**Wix MCP Docs**](https://dev.wix.com/docs/develop-websites/articles/get-started/about-the-wix-site-mcp)

## Available MCP Tools

### GetBusinessDetails
Retrieves business and site details such as timezone, email, phone, and address.
- No parameters required.

### SearchInSite
Searches the site for information.
- **searchTerm** - The term to search for in the site.

### SearchSiteApiDocs
Retrieves the API documentation for the Wix business solutions installed on
this site, and informs the AI client how to use the APIs. Use this tool for
querying products and services (instead of SearchInSite).
- **searchTerm** - The term to search for in the site API documentation.

### GenerateVisitorToken
Creates a new visitor session and obtains a visitor access token for the site.
Must be called before making any CallWixSiteAPI request if no visitor token
is already available in context.
- No parameters required.

### CallWixSiteAPI
Calls API methods on the site to perform actions on a visitor's behalf,
such as querying site data, booking an appointment, or starting a purchase.
- **visitorToken** - Visitor access token. Use GenerateVisitorToken first if not available.
- **url** - Absolute URL of the API method to call (e.g. https://www.wixapis.com/...). Retrieve using SearchSiteApiDocs.
- **method** -  HTTP method to use for the API call.
- **body** -  Request body as a valid JSON string.

### ReadFullDocsArticle
Fetches a complete article from the Wix developer documentation portal.
- **articleUrl** -  URL of an article in the Wix developer documentation portal.

### ReadFullDocsMethodSchema
Fetches the full schema for a Wix API method. Should be called before
calling the actual method via CallWixSiteAPI.
- **articleUrl** - URL of the reference article for the Wix API method.

## What Visitors Can Do via AI + MCP

- Ask questions and get relevant answers without having to browse the site

## Notes

- No authentication required to connect to the MCP endpoint
- Only public information accessible on the site is available
- Content is always live and up to date
- To receive tool updates, implement a tools/list call upon receipt of a tool update notification