Zooming with Evgeniya Kuzmina, "Eve", Creator Marketing Manager

PLEASE DO NOT SHARE THIS BLOG

Date: August 22, 2025

1) Eve’s Role & Interest

• Title: Creator Marketing Manager at Sequencing.com

• Focus: Finds compelling stories and builds content (short videos/campaigns) with them

• Very interested in our story (she has sleep issues); highly interested in collaborating

2) My Own Story Highlights

• Condition & Onset: Sleep-entry jerking after multiple inflammatory assaults (9/11 exposure, mold, Lyme, steroid era from misdiagnosis)

• Symptoms: Hypnic jerks, “guitar-string/exploding head/hallucination" sensations, REM intrusions: movement-like kicks/punches, wake-with-jolt

2a) Community Highlights:

• Community: ~3,000-member FB group; research cohort ~55

• Harvard Manton Ctr → Sequencing: Harvard provided raw exome data; Sequencing.com made it viewable & comparable across cohort/family

• Insights Enabled: Identified 7–8 relevant variants in family (vs typical 0–1); corrected errors from earlier panels/reports

• Tools & People: Erika guided VUS confidence interpretation; Ryan granted a free month, enabling deep exploration, leading to AI analysis and:

• Research / Manuscript: 60-page manuscript initially rejected → connected with neurogeneticist Dr. Jay Lombard, who validated and extended findings

• Concept: Advancing Sleep-Onset Vasomotor Myoclonus (SOVM) as a neurovascular/ion-channelopathy framework; animal literature supports mechanism.

3) Needs & Challenges

• Visibility/Awareness: Condition often dismissed as 'anxiety'; need platform reach and legitimacy

• Funding: Ongoing costs (e.g., ~$1,000/month researcher retainer); considering crowdfunding; many patients face financial hardship

• Expertise: Seeking an ion channel researcher to round out team

• Patient Access: Some patients cannot afford kits

4) Eve’s Offers & Collaboration Paths

• Affiliate Program: 20% per kit via personalized link

• Video Collaboration: Short, authentic videos (<1 min; a series) to tell your story; internal partner Jacob can help distribute widely

• Kits: Ability to provide creator-coded complimentary kits for select community members/family

• Long-Term: Potential for a dedicated SOVM health report if your dataset matures (like Parkinson’s/Alzheimer’s reports)

5) Personal Connection & Clinical Discussion

• Eve highlighed sleep challenges, created rapport

• Shared cultural background and discussion of stress→acidity→inflammation link

6) Action Items / Next Steps

Eve will:

•   Send affiliate link enrollment form

•   Share example videos; coordinate with Jacob on distribution

•   Explore complimentary kit links for selected community members

  I will:

•   Draft/storyboard a short video (or mini-series) highlighting your story + community + Sequencing’s role

•   Identify patients/family for potential free kits

•   Continue outreach to ion channel researchers; advance manuscript