To ensure no one affected by ACTA2 feels unseen or alone by building a compassionate community, amplifying real life experiences, and advancing awareness, research, and support.
What is MSMDS?
MSMDS is a rare genetic condition that affects how the body’s blood vessels work—but behind every diagnosis is a person, a family, and a story. Ours is Lily.
It can impact multiple systems in the body, often in complex and unpredictable ways, meaning those affected may face ongoing medical challenges and uncertainty.
Because it is so rare, many families feel isolated, navigating a condition few have heard of. But they are not alone. By sharing experiences and building understanding, we can bring visibility to MSMDS, support those living with it, and help drive the research and awareness needed for better care and brighter futures.
You are twice as likely to be struck by lightening, than to receive a diagnosis of MSMDS.
Lily's Story
Imagine being told your child has an ultra-rare genetic condition—one so uncommon that only a handful of cases exist worldwide. Imagine navigating the unknown, where even medical professionals are still learning, and where your family must find answers in the dark.
Lily’s story is our story.
Our mission is to turn our lived experience into lasting change—raising awareness, supporting research, and building a compassionate community so that no one affected by this condition ever feels unseen or alone.
How can you help?
Early diagnosis is critical. Raising awareness of the condition, allows life-saving interventions in infants and children. Your support will allow us to work with medical professionals to help them understand the early signs of MSMDS.
To help us grow the community you can sign up to our newsletter below or follow us on our social channels. We aim to provide critical funding to leading institutions exploring CRISPR, MicroRNA and viral-vector treatments to address ACTA2 gene mutations directly.
Your donations support the logistical framework required for global clinical trials, including patient registries and worldwide coordination.
Join our community and follow our journey
Being part of a community helps carry the weight together. We share stories and support one another on Instagram and TikTok, while our partners in the US host an established Facebook community.
Follow our journey and be part of something that connects, supports, and reminds you—you’re not alone.
Updates straight into your inbox
Sign up to our newsletter to receive thoughtful updates and meaningful news from our growing community.
No noise—just what matters.