PDF ◈
💜
. . . a website guided tour
We strive to be compassionate with a humble but resonant voice. We weave our personal history with biological concepts. A history:
— from birth, through development years, through early adulthood, through four years of bed rest,
— to my first diagnostic breakthrough at Scripps La Jolla, to a second diagnostic breakthrough at the Gonda Vascular Center, Mayo Clinic, Minnesota.
I have an upfront confession, a lifelong habit. I write 100 words when 50 would do. I’m 71 years old and not likely to improve. I strive to edit, rewriting over time. Your candid feedback is always welcome.
Our goal: to serve both laypeople (moms, dads, individuals born rare) and medical professionals, using balanced storytelling with scannable, structured clarity.
Our approach: to simultaneously reach a Dual audience.
[ Our Two-Tier Content Hierarchy ]
- Tier 1 Written for parents and patients. Focuses on navigating diagnosis and practical living, while explaining Mother Nature did this, not us.
- Tier 2 Framed as a downloadable or distinct sub-section (“Take This to Your Doctor”). This satisfies the scientific reader while providing non-clinicians with precise language to use in medical appointments without feeling overwhelmed.
[Dual Audiences ]
- For Parents/Patients: Remove dense jargon from narratives and offer actionable hope. For 3 decades we tried. We have Asked—Searched—Sourced— Interpreted—Synthesized—Translated. This not just an acronym this our lived experience. Assist.
- For Clinicians/Specialists: Reference established frameworks early (e.g., ISSVA, Hamburg), while offering tools we developed, not as a substitute for clinical judgment, but as patient-led mapping of rare vascular architecture.
Reviewed: 2028.08.04