Purpose

To research treatments and cures for rare disease, LMNA-related congenital muscular

dystrophy (L-CMD)

To expedite and implement a cure for L-CMD

To openly share any discoveries with others who may benefit

Vision

Empower

Scientists, researchers and doctors in both for-profit and not-for-profit organizations to conduct

the most pressing, highest return research to further a cure for L-CMD

Embolden

Other rare disease families to advocate for their children; patient advocacy groups, researchers

and scientists to work towards actionable solutions

Connect

Rare disease, scientific, medical, fundraising and local communities to best utilize resources

and knowledge to advance a cure

Guiding Principles

Science

Transparency

Connection

Inclusion

Action

Urgency

Grit

Creativity

Highest Good / Best Use