My Story: From Patient to Partner

Living with Multifocal Motor Neuropathy transformed my understanding of what rare disease patients truly need. Now I use that insight to help companies create solutions that actually work.

The Personal Journey

When I was diagnosed with Multifocal Motor Neuropathy (MMN), a rare neurological condition that causes muscle atrophy and loss of motor function, I discovered firsthand the challenges facing rare disease patients: delayed diagnoses, limited treatment options, and feeling unheard in the medical system.

The Professional Mission

This experience ignited my passion for transforming how biopharmaceutical companies approach rare disease treatment development and how healthcare services are provided to those with rare diseases. I realized that the missing link wasn’t just better science—it was genuinely understanding and incorporating patient experiences into every decision.

My Background

I bring together a unique combination of experiences that few rare disease consultant can match:

  • Board Director, GBS|CIDP Foundation International: Serving on the board of the leading global foundation supporting patients with GBS, CIDP, and MMN.
  • Patient Representative, NZ Blood Service Clinical Governance Board: Bringing patient perspective to clinical governance and blood service delivery decisions.
  • Senior Executive Leadership: Proven leader who has successfully led teams of up to 50 people and managed operations for organisations with over 500 staff.
  • Multi-Million Dollar Project Delivery: Track record of designing and successfully delivering multi-million dollar infrastructure upgrade projects.
  • Global Stakeholder Experience: Skilled communicator with extensive experience working with commercial organizations, the UN, NGOs, and Government departments.
  • High-Risk Decision Making: Strategic and operational planner, experienced in decision making under high-risk conditions and uncertainty.
  • Lived MMN Experience: Daily experience with Multifocal Motor Neuropathy and authentic connections throughout the rare disease community.
  • Social Impact Leader: Founder of Making the Most of Now, dedicated to improving understanding of MMN and improving patient connectivity.
What This Means for You

When you work with me, you’re not just getting a consultant—you’re getting a partner who understands both sides of the equation. I can translate patient needs into business language and business goals into patient benefits. This dual perspective creates solutions that truly work for everyone.

Strategic Patient Integration

I embed authentic patient voices throughout your entire development process, from early research through to market launch, ensuring solutions that patients actually want and need.

Operational Excellence

My leadership background enables me to not just design patient-centered strategies but actually implement them effectively within your organization.

Ecosystem Catalyst

I connect you with the rare disease community, patient advocacy groups, and key stakeholders you can’t reach alone, creating powerful partnerships that accelerate impact.

Why Companies Choose Me

Authentic Patient Connection

I don’t just research patient needs—I have genuine lived experience with MMN and established networks within rare disease communities. My insights are real, raw, and actionable because they come from walking this journey myself.

Proven Senior Executive Leadership

I’m not just a consultant—I’m a senior executive with a proven track record of leading large teams (50+ people) and managing multi-million dollar projects. I’ve successfully worked with commercial organisations, the UN, NGOs, and Government departments, bringing real operational expertise to your rare disease strategy.

Rare Disease Ecosystem Builder

My ability to build connections across the entire rare disease ecosystem means you gain access to partnerships, patient insights, and collaborative opportunities that would take years to develop independently.

For more information please contact us at clive@makingthemostofnow.co.nz or +64(0)21771624.