Fullerton 9-Year-Old With Ultra-Rare Disease Among Participants as Local Business Rallies Community for 4 Million Californians Living With Rare Diseases
What:
More than 100 Southern Californians will gather Saturday, February 28, at A Snail’s Pace running shop in Brea for a family-friendly Rare Disease Day 5K fun run and walk, rallying support for the more than 4 million Californians and 30+ million Americans living with a rare disease on this national awareness day.
The event is hosted in partnership with Orange County running footwear retailer, A Snail’s Pace, and the National Organization for Rare Disorders (NORD®), with all proceeds benefiting NORD to advance research, patient care, and advocacy for rare disease families.
Among those participating and available for interviews:
- Maddox Briney, 9, of Fullerton, who is one of approximately 600 people worldwide and about 10 in California living with KIF1A Associated Neurological Disorder (KAND), an ultra-rare genetic condition. Maddox will walk alongside his mother, Bonny, friends, and classmates, putting a local face to rare diseases in California and nationwide. While individual rare diseases affect small populations, collectively they impact 1 in 10 Americans, of which more than half are children.
- Chandler Peppers, 31, of Newport Beach, who relocated to Southern California from Tennessee for life-saving surgery related to Superior Mesenteric Artery (SMA) syndrome and lives with multiple rare conditions, including Ehlers-Danlos syndrome. After years searching for answers, she taught herself to read her own CT scans and identified abnormalities that ultimately led to her diagnosis, a condition that left her unable to eat or drink without severe pain. She will be participating as a walker, with her husband, in hopes of sharing her story to raise awareness about invisible rare diseases and the need for early diagnosis and better physician education.
- Joe Lourenco, event sponsor and owner of A Snail’s Pace, is available to discuss why he’s mobilizing the Southern California running community for Rare Disease Day. He can speak to how his business sees firsthand the unique footwear and physical challenges many rare disease patients face — and his commitment to making movement accessible through adaptive, custom-fit footwear solutions.
- Kelly Esperias, Chief Strategy & Operations Officer of the National Organization for Rare Disorders (NORD®), is available to speak about Rare Disease Day® and NORD’s “Show Your Stripes” campaign, as well as the often invisible and devastating challenges families face. Kelly can discuss why rare disease is a public health challenge hiding in plain sight and how four leading California medical and research centers, including Children’s Hospital of Orange County, at the forefront of diagnosing and treating individuals with rare diseases and leading research as part of a national network of 46 NORD Rare Disease Centers of Excellence.
When: Saturday, February 28, 2026
Time: 7:30 a.m. – 9:00 a.m. PST
Where: A Snail’s Pace
1040 E Imperial Hwy #F2
Brea, CA 92821
Rare Disease Day shines a spotlight on the 30 million Americans and 300 million people worldwide navigating complex medical, financial, and emotional challenges — many without approved treatments. Participants will “Show Their Stripes” in honor of the zebra, the symbol of the rare disease community, inspired by the medical school proverb, “When you hear hoofbeats, think horses, not zebras.” Rare disease patients are the “zebras,” often overlooked or misdiagnosed because their conditions are uncommon.
WHY IT MATTERS
- 1 in 10 Americans lives with a rare disease
- Nearly 4 million Californians are impacted
- There are more than 10,000 rare diseases and fewer than 5% have approved treatments
- Medical costs for rare diseases may reach $400 billion, rivaling those of cancer, heart failure, and Alzheimer’s disease
- Diagnosis can take five years or longer
MEDIA CONTACT
Cheryl Herbert, cherbert@rarediseases.org/ 719-330-4053
ON-SITE Media Contact: Kelly Esperias, kesperias@rarediseases.org/951-427-6389
/PRNewswire/ — Feb. 26, 2026/
SOURCE National Organization for Rare Disorders (NORD®)
