The Mission
At Rowing 4 Rare, our mission is to raise awareness and accelerate progress for families affected by rare diseases — especially those with vascular conditions. We support innovative research, emerging gene therapies, and novel treatments that bring real hope to those waiting for answers.
Rowing isn’t our mission — it’s our megaphone.
Founded by a passionate mom and rower, Rowing 4 Rare was born from the desire to combine purpose with perseverance — to take the fight for rare disease visibility to the open sea. In 2027, our founder will take on the World’s Toughest Row across the Pacific Ocean, using every stroke to shine a global spotlight on a cause too often unseen.
Every wave conquered, every meter crossed, is dedicated to the millions of families waiting for healing, hope, and change. Together, we can make waves difference!
THE ROW
The World’s Toughest Row — Our Challenge for Change
WE AIM TO RAISE 2.5 MILLION
We will be taking on the World’s Toughest Row – Pacific, launching June 2027.
This ultra-endurance race covers 2,800 nautical miles across the vast Pacific Ocean. From Monterey, California to Kauaʻi, Hawaii. Rowers face relentless waves, isolation, and extreme conditions, testing not only physical endurance but also mental resilience.
For us, this challenge represents far more than a race. It symbolizes the daily fight and determination of those living with rare diseases, especially those affected by vascular anomalies. Just as every stroke moves us closer to land, every step forward in innovative research and treatment development brings hope to millions of families.
Our goal is to raise $2,500,000 to fund and accelerate progressive research and emerging gene therapies for rare diseases. $150K is needed for to get us across the ocean.
Together, we row for progress.
Together, we’re Rowing 4 Rare.
Community
Our
Rowing 4 Rare was born from my daughter Jordan’s journey with a rare vascular condition called Parks Weber Syndrome. Watching her courage inspired me to turn heartbreak into hope. I began having a crazy dreams of using the global stage of ocean rowing to raise awareness and fuel progress for rare disease research. Every stroke is for families like ours, fighting battles most never see
Amber Robidou
Rare Disease Advocate & Founder
Jordan was born with an ultra-rare condition called Parkes Weber Syndrome that has no cure and no approved treatment. Each day, her care focuses on managing symptoms, like controlling pain, preventing complications, and helping her live life as fully as possible. But every hospital stay and every new challenge reminds us how much more is needed for children like her.
That’s why the future of gene therapies feels like liquid hope.
Hope not just for easing pain, but for rewriting stories — for transforming what once felt impossible into a future filled with possibility.
Jordan R.
Rare Disease Warrior
Born with a rare genetic condition that has required more than 60 surgeries, Melissa’s resilience and hope shine through every challenge she faces. Despite the long medical journey, she continues to live with strength and purpose. The promise of gene therapy and other groundbreaking treatments gives her hope for a future with better options, not just for herself, but for others walking a similar path. Melissa is proud to be part of a community pushing for innovation and progress in rare disease research.
Melissa C.
Rare Disease Warrior
Being born with a malformed hip and knee, followed by a recurring popping shoulder at swim practice and chronic pain, Addie had all indicators of a connective tissue disorder, but struggled to get a specific diagnosis. While navigating her own health needs, she found herself making connections with others suffering from connective tissue disorders. Although they haven’t yet found a gene or marker to explain Addie’s symptoms, she has taken an interest in rare diseases and genetic disorders and knows how much hope gene therapies have given families. Support and fundraising for gene therapies means access to hobbies, careers, and lives that couldn’t have been imagined a decade ago and she cannot wait to see what the future holds!
Addie S.
Rare Disease Warrior
Diagnosed at age four after years of unexplained weakness and frequent hospital visits, Jacob’s rare neuromuscular condition has shaped much of his young life. Simple things like climbing stairs or running with friends can be a challenge, but his determination and bright spirit have never wavered. Through his journey, his family has met other children facing rare disorders, and they’ve seen firsthand how research and genetic therapies can change lives. Jacob dreams of one day becoming a scientist so he can help discover treatments for kids like him. His story is a reminder that every breakthrough begins with hope and every child deserves the chance to dream big.
Jacob S.
Rare Disease Warrior
At just seven years old, Leo relies on a walker and the steady support of his family to move around. His rare condition gradually weakens his muscles, making everyday activities increasingly difficult, yet his curiosity and laughter never fade. Leo loves building towers with blocks and exploring the outdoors, even if it takes extra effort and time. His family has connected with other children facing similar challenges and finds encouragement in the progress of medical research for rare diseases. Each new discovery brings hope that therapies could help maintain his independence and preserve the abilities he cherishes. Leo’s story is a reminder that even small steps are victories, and every contribution to rare disease research helps children like him continue to explore and enjoy life.
Leo V.
Rare Disease Warrior