Quoin Pharmaceuticals’ Latest NETHERTON NOW Video Details the Life of a Family Living with Netherton Syndrome

Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals

“Kristi’s and Kodi’s story continues to highlight not only the extent of the medical care and the endless doctor’s appointments that are required for Netherton Syndrome patients, but also the everyday reality of the disease, including the painful bathtub routine every morning and evening, the endless itching, the bullying in the classroom and the relentless insensitivity of thoughtless questions from strangers”

Denise Carter, Co-Founder and Chief Operating Officer of Quoin Pharmaceuticals

“Kristi’s call for teachers and the public to learn about this disease is what NETHERTON NOW was created to answer. Our aim is to raise awareness about the disease beyond the Netherton community, within the general public, treating clinicians, and policy and law makers. These patients and families deserve a voice.”

Michael Myers, Co-Founder and Chief Executive Officer of Quoin Pharmaceuticals

“Netherton Syndrome affects far more than the skin. Families carry the cost for years, in occupational, physical and speech therapy, specialist appointments, endless nights of interrupted sleep and time away from work.”

Michael Myers, Co-Founder and Chief Executive Officer of Quoin Pharmaceuticals

“There is still no approved treatment. In August, interim results from our ongoing Phase 2/3 study demonstrated that QRX003 achieved statistical significance on the primary and key secondary endpoints. We expect to complete full recruitment for this study by the end of 2026 and report topline data in the second quarter of 2027, and we look forward to sharing those results with the Netherton Syndrome community.”

Moise Levy, Pediatric dermatologist

“When you think of Netherton’s and looking at a newborn, for instance, who is diffusely red and scaling, the hairs have a distinctive difference under the microscope and the eyebrows are a perfect place to grab a sample. And then genetic testing is done and that is the icing on the cake, so to speak.”

Kristi Kristofferson, Mother of Kodi, who has Netherton Syndrome

“Once she came out, they started cleaning her up and noticed her knuckles were really red. They were like, ‘We need to take her over to NICU to get this checked out.’ And she was in NICU for 10 days.”

Kristi Kristofferson, Mother of Kodi, who has Netherton Syndrome

“Learning how to crawl was a little delayed because her body just hurt.”

Kristi Kristofferson, Mother of Kodi, who has Netherton Syndrome

“We did occupational therapy, physical therapy, speech therapy. We’ve had a myofascial therapist.”

Kristi Kristofferson, Mother of Kodi, who has Netherton Syndrome

“It was a lot of appointments, lots of time missed from work.”

Kristi Kristofferson, Mother of Kodi, who has Netherton Syndrome

“As we get older and we’re in school, we have a schedule, so we have to wake up early and peel off our face. We soak that skin with wet towels in the bathtub. We take our time. When we get in the water, it hurts or it burns. So we face that challenge each day.”

Kristi Kristofferson, Mother of Kodi, who has Netherton Syndrome

“Lots of tears shed by both of us in the mornings doing those baths and getting ready.”

Kristi Kristofferson, Mother of Kodi, who has Netherton Syndrome

“She’s always hungry. Her skin is regenerating 20 to 30 times faster than another kid who’s eight years old. Her skin’s working so hard, so we try to keep her pumped full of protein and making sure she’s getting all the good nutrients that she needs.”

Kristi Kristofferson, Mother of Kodi, who has Netherton Syndrome

“Nobody sees anyone with ichthyosis. So if someone were to come up and say, ‘Oh my God, it looks like your child’s having an allergic reaction.’ Nope, she’s fine. She just has a rare skin condition.”

Kristi Kristofferson, Mother of Kodi, who has Netherton Syndrome

“Everyone needs to educate and especially at school, if you’re going to be with my child for two semesters, learn about it.”

Kristi Kristofferson, Mother of Kodi, who has Netherton Syndrome

“I’m really just in awe of how strong she is. She’s a role model to us and to our family.”