Our Origin

The Sharon Raymond LVM Advocacy Center was founded in honor of Sharon Raymond, whose life journey with a rare, treatment-resistant Lymphatic Vascular Malformation (LVM) has been marked by courage, resilience, and unrelenting perseverance. After decades of observation, advocacy, and navigating a fragmented care landscape, we recognize the urgent need for a dedicated voice and platform for patients like Sharon—those who live with conditions beyond conventional treatment pathways.

Our Mission

To transform the landscape of care, research, and advocacy for patients with treatment-resistant rare LVMs through:

• Patient-centered advocacy
• AI-powered insights
• Collaborative research
• Innovative pain and symptom management
• Global awareness and support

The Challenge

LVMs are complex congenital conditions affecting the lymphatic and vascular systems. Patients with treatment-resistant forms often endure:

• Multiple failed interventions (surgery, laser resection, sclerotherapy, targeted drugs).
• Chronic bleeding, anemia, and life-threatening complications.
• Unrelenting pain and disfigurement.
• Psychological and emotional burdens from invisibility and misunderstanding.

Despite decades of effort, there is no standardized pathway for these patients. Their voices are often lost in the vast landscape of oncology, hematology, and rare disease medicine.

Our Vision

We envision a future where:

• Every patient with rare, treatment-resistant LVM has access to personalized, precision-guided care.
• AI tools amplify small, scattered datasets into meaningful clinical insights.
• Compassionate-use pathways are streamlined, ensuring access to therapies beyond borders.
• Families have one central advocacy hub—not just to survive the journey, but to be heard, supported, and empowered.

Core Pillars of Action

1. Advocacy & Awareness

• Push for recognition of treatment-resistant LVMs as a distinct medical category requiring unique clinical and policy attention.
• Elevate the patient voice through education, media campaigns, and storytelling.

2. AI-Powered Research & Data Sharing

• Build a global registry of treatment-resistant LVMs, anonymized and secure.
• Use AI and machine learning to:
• Detect hidden treatment-response patterns.
• Predict likely outcomes for novel therapies.
• Connect patients worldwide in shared data ecosystems.

3. Clinical Collaboration & Innovation

• Partner with vascular anomaly centers, palliative care programs, genetic researchers, and interventional radiologists.
• Advocate for clinical trials of underutilized therapies (e.g., levorphanol, oral cannabinoid sprays, targeted nerve modulation).
• Support AI-driven drug repurposing efforts for LVM.

4. Patient & Family Support

• Build peer networks for patients and caregivers.
• Offer educational resources on pain management, transfusion strategies, and rare-disease navigation.
• Promote mental health and resilience programs.

5. Policy & Access

• Campaign for insurance coverage of non-standard therapies.
• Work with regulatory bodies to expand compassionate-use access for novel treatments.
• Position AI as a tool to bridge evidence gaps for rare disease approval pathways.

Why AI is Our Catalyst

• From Scattered to Connected: Rare disease data is fragmented across hospitals and borders; AI can unify it.
• From Guesswork to Guidance: Algorithms can model treatment outcomes where clinical trials are too small.
• From Silence to Signal: AI can amplify patient-reported data, making lived experiences visible to clinicians and policymakers.

A Call to Action

The Sharon Raymond LVM Advocacy Center calls on:

• Patients & Families: To join our registry and share their stories.
• Clinicians & Researchers: To collaborate on compassionate-use programs and AI-driven studies.
• Policy Makers: To prioritize treatment-resistant LVMs as an urgent unmet medical need.
• AI & Tech Innovators: To partner with us in pioneering precision advocacy for one of the most overlooked rare diseases.

Our Commitment

We stand as a beacon of hope for those who have endured decades of uncertainty. We are committed to bridging human experience with AI capability, creating the first advocacy platform that brings precision tools into the hands of families who need them most.

Together, we will rewrite the future of treatment-resistant LVMs.