Doctoral student and global health advocate Shayanne Martin created a foundation to find a cure for her daughter’s rare disease

As a child, Shayanne Martin dreamed of becoming a scientist who would change the world by curing diseases, but by the time she reached high school she was more interested in a career field where she could serve the immediate and practical health needs of communities. That’s when she discovered public health.

“And I thought, oh, this is great because I can help others who are treating and curing disease. And with public health, you can prevent disease,” said Martin, a doctoral student at UTHealth Houston School of Public Health in San Antonio.

Martin said she was drawn to the way that public health could be used to improve the lives of entire communities and found the work more fulfilling than she could have imagined.

She dove into her new career with zeal, earning her masters of public health from Johns Hopkins Bloomberg School of Public Health, where she met her husband, Jeremy Tanner. With a desire to focus on global health, she spent seven years tackling HIV in sub-Saharan Africa by recruiting, training and deploying healthcare workers to the areas that most desperately needed them.

By 2021, Martin and Tanner were living in California, and they were preparing to move to Zambia for a year when they found out they were expecting their first daughter.

“We were going to Zambia no matter what,” Martin said. “With a child, without a child, it didn’t change our plans.”  

But when their daughter Cora was born in March, 2022, just a few months before the planned move, Martin immediately knew something was wrong. Cora had a clubfoot, hip dysplasia, low muscle tone, respiratory distress, bone irregularities and difficulty eating, but doctors could provide few solid answers about the root causes.

“It was an exhausting experience because we just kept finding one more thing,” Martin said.

Finally, Martin asked for genetic testing and at six weeks old Cora was diagnosed with CLIFAHDD (Congenital Contractures of the Limbs and Face, Hypotonia, and Developmental Delay) an ultra-rare, severe neurodevelopmental disease. It’s such a rare condition that information was difficult to find at first.

“When she was diagnosed, there were only 14 studied cases in the literature,” Martin said. “It was a really hard thing to read about on our own.”

The reported cases all had severe neurodevelopmental delay, most had feeding and breathing tubes, and many died early in childhood. CLIFAHDD is the result of a random genetic mutation, and experts say the etiology is unknown and could potentially happen in anyone.

Suddenly their plans for going to Zambia changed, and instead of staying for a year, Martin and Tanner decided to visit for just seven weeks. But as Cora’s diagnosis began to unfold, so did a new calling when they began connecting with parents of children with rare diseases all over the world and soon recognized the need and opportunity for more research into ultra-rare genetic disorders.

“The best chance of finding cures for rare diseases is passionate parents,” Martin said. “We never set out to start a nonprofit, but we are finding that really to convene scientists and clinicians in the U.S. we had to have an organization.”

In July, 2023 the couple co-founded the Channeling Hope Foundation alongside another parent affected by similar diseases. Within months, the foundation had raised $50,000 from friends and family, and eventually received a five-year $800,000 grant that allowed them to hire their first staff member and begin hosting global scientific meetings.

This year, the foundation hosted the second international NALCN Channel and Related Diseases Conference in San Antonio on Oct. 10-12.

Martin began connecting with parents through social media groups she created for NALCN-related diseases, and Channeling Hope became not just a name but a lifeline, uniting families from more than 35 countries.

“I would say every month there’s at least one new family that finds us,” Martin said.

Despite mounting responsibilities and a heavy parenting load, after relocating the family to San Antonio, Martin decided to pursue a doctorate. In 2024 she began her DrPH program at UTHealth Houston School of Public Health in San Antonio.

“As I worked in the public health field, I realized I want to implement my own ideas and lead projects,” Martin said. “And I want to make sure I don’t lose sight of my own goals.”

UTHealth Houston School of Public Health was her first choice and the only school Martin applied to because she said it was important to her to have a school located in San Antonio where she could connect in-person with staff, faculty and students.

While she is now a rare disease advocate, Martin said her global and public health background inform her decisions at every step of this journey, and she has found that the two goals are more connected than she once thought. She said she has always loved that global public health usually brings maximum benefit to the most amount of people for the lowest possible cost. Raising money to find cures for rare diseases that affect a tiny portion of the world’s population felt foreign to her personal philosophy at first, she said, until she realized how many people worldwide are suffering from rare diseases.

“When Cora received a rare diagnosis, she was one of 30 identified, now she’s one of about 100,” Martin said. “Altogether, there’s more than 400 million people in the world living with other [rare] diseases, and there’s over 10,000 identified rare diseases. So altogether, rare diseases are not rare.”

Now raising two daughters, Cora and Willow, who was born in 2025, Martin is candid about the complexity of it all.

“It’s really challenging,” she says, “but I’ve loved it. I’m so happy we’re here and I have a really great support system.”

At three years old, Cora is a curly-headed bundle of energy. Defying the odds of many kids with CLIFAHDD, she walks and climbs in and out of chairs with impressive agility, smiling at everyone she meets. Martin said many people do not realize Cora has a disability upon first meeting her, but they also often underestimate how old she is because she is nonverbal and small for her age. Martin said she is grateful that Cora is learning to engage with the world, and she holds out hope that one day Cora will be able to speak.

As she looks ahead to completing her DrPH, Martin said she has considered a future in policymaking where she can more directly impact how research funds are spent. She dreams of finding ways to fund rare disease research, while also promoting public health initiatives related to diseases, like expanding disability services, and improving early childhood intervention access in Texas and beyond.

“The most money for rare disease research is in the U.S. and Europe,” she said. “But if we find a treatment or a cure, I want it to be available in all countries.”

Martin said she has come to view this stage in her life as a full-circle moment.

“When I was a child, I wanted to find a cure for a disease,” Martin said. “I was thinking of curing cancer, but now I have this chance to help cure a disease. Of course it would be the scientists actually finding the cure, but I bring the management, the strategy, the convening of people. And I think that’s what public health is about. It’s convening resources - money, science, people - to prevent and manage disease.”