Stephanie Snow lived her life with a rare, disabling genetic condition, but she refused to give in to its inevitable constraints. She died Jan. 2 at age 26, having inspired the Santa Maria Valley community to raise thousands of dollars for research into the extra bone growth.
After announcing her death, Snow’s family revealed plans to honor her love for animals through a memorial campaign to buy much-needed radiology equipment for the Santa Maria Valley Humane Society.
As a young girl, Snow was diagnosed with fibrodysplasia osificans progressiva, or FOP, a genetic disorder that causes extra bone to form over muscle tissue and connective tissue such as tendons and ligaments.
Over time, this extra skeleton steadily restricts the patient’s movement.
“Through Stephanie’s courage and grace she was able to spread awareness, raise funds and be a part of the research efforts that continue the work to find a cure for her devastating condition,” her family said on a GoFundMe page announcing the fundraising campaign for animals.
After the diagnosis, Snow’s family sought answers and eventually connected with an orthopedic surgeon who researched FOP.
“I have known Stephanie since she was 3 years old and watched her grow up,” said Dr. Frederick Kaplan of the University of Pennsylvania School of Medicine. “She was not only my patient, but a member of my family. The loss is profound.
“Stephanie is an icon in Santa Maria and a cherished soul in our global FOP family. She endured a lifetime of extraordinary challenges with FOP and prevailed over every one of them with a smile and spirit that is noble and inspiring.”
The disorder affects 1 in 2 million people, with only 800 patients known across the globe. In addition to Snow, Santa Barbara County is home to a second woman diagnosed with FOP, Cassie Eckart.
In 2006, Kaplan’s team at Penn announced a key breakthrough: They had identified the gene mutation responsible for FOP.
This discovery was considered key for refining treatment plans and eventually finding a cure for FOP.
Through Find-A-Cure benefits barbecues each April and banquets held in August, the Snow family led efforts to raise money for research into FOP. Kaplan attended many of those fundraisers, which were accompanied by banners of a young Snow and her infectious smile.
The fundraisers, which started in 1994, were considered the longest-running benefits for FOP, according to the International FOP Association website.
“Her magical personality coupled with the unwavering dedication of the Snow Family helped mobilize a small town with a big heart — and brought the spotlight of awareness and critical funding to an unknown disease that indelibly changed its course for future generations of children worldwide,” Kaplan said.
“I am extremely grateful that Stephanie and her entire family have been such an incredible part of my life. I will cherish and sustain the wonderful friendships and all the incredible memories forever.”
The Snow family’s efforts, which included a gas station owner’s donation of a penny per gallon of fuel purchased, raised more than $1 million for FOP research.
However, her family noted FOP did not define the woman who loved animals and raised rabbits and sheep through 4-H programs.
“As her disability progressed, she found new ways to continue her love of caring for animals through hand-raising abandoned newborn kittens and fostering animals in need,” her family said.
“Now is the time to honor Stephanie’s passion.”
The family hopes to raise $75,000 to purchase a digital radiology system for the local Humane Society, but also available for use by Santa Barbara County Animal Services.
This radiology suite would be named in honor of Snow, a Righetti High School graduate.
“This is something that would continue to give great meaning to Stephanie’s legacy, and a way to give back to a community that has given so much to Stephanie and our entire family,” her family said.
A memorial service is planned for 1 p.m. Jan. 21 at the Santa Maria Elks Lodge, 1309 N. Bradley Road, the family said Saturday.
Survivors include her parents, Jennifer and Bob Snow, along with a sister, Ashley Snow Bognuda, and brother-in-law Dylan.
In lieu of flowers the family asks that donations be made to the Stephanie Snow Memorial Fund. Clic here to make an online donation.
Arrangements are by Dudley-Hoffman Mortuary.
— Noozhawk North County editor Janene Scully can be reached at jscully@noozhawk.com. Follow Noozhawk on Twitter: @noozhawk, @NoozhawkNews and @NoozhawkBiz. Connect with Noozhawk on Facebook.