Cockayne Syndrome Foundation

💙 Happy Parent Appreciation Day 💙

Today, we honor the incredible parents who love without limits.

To the mothers, fathers, grandparents, guardians, and caregivers who advocate fiercely, celebrate every milestone, navigate countless appointments, comfort through the hardest days, and find joy in the smallest victories—today is for you.

Parenting a child with Cockayne Syndrome (CS) or Trichothiodystrophy (TTD) is a journey filled with challenges, but it is also filled with extraordinary love, resilience, and unwavering hope. Your strength inspires our community every single day.

Thank you for being the voice when your child cannot speak, the comfort when they need reassurance, the champion who never gives up, and the heart of our foundation.

We see you. We appreciate you. We celebrate you.

From all of us at the Cockayne Syndrome Foundation, thank you for the love you pour into your families and for reminding us that the greatest acts of courage are often found in the quiet, everyday moments.

Happy Parent Appreciation Day. 💙

Meet Dr. Laura Niedernhofer ✨✨

We are incredibly honored to introduce Dr. Laura Niedernhofer, a world-renowned physician-scientist whose life's work is dedicated to improving the lives of individuals living with DNA repair disorders, including Cockayne syndrome.

Dr. Niedernhofer earned her bachelor's degree in Chemistry from Duke University before completing both her MD and PhD in Biochemistry at Vanderbilt University. She continued her postdoctoral training in the Netherlands at one of the world's premier laboratories studying genome instability disorders, laying the foundation for a career devoted to understanding the impact of DNA damage on human health.

Throughout her career at the University of Pittsburgh, Scripps Research Institute, and now the University of Minnesota-where she serves as Director of the Masonic Institute on the Biology of Aging and Metabolism-Dr. Niedernhofer has remained focused on one mission: discovering therapies that can improve the lives of patients with DNA repair disorders. Her groundbreaking research has the potential not only to benefit rare disease communities like ours but also to transform the treatment of aging and chronic diseases.

In addition to leading an internationally recognized research program, Dr. Niedernhofer serves on numerous scientific advisory boards and national organizations dedicated to advancing aging research and supporting families affected by DNA repair disorders.

We are deeply grateful for Dr. Niedernhofer's dedication, expertise, and unwavering commitment to advancing research that gives families hope.

Check out our website for more information! https://www.cockaynesyndromefoundation.org/post/dr-laura-niedernhofer

Meet Nikki Herson!

We are honored to introduce Nikki Herson, a dedicated advocate, leader, and mother of four—one of whom is living with Cockayne syndrome.

Before becoming a full-time champion for the rare disease community, Nikki held a senior management position in the automotive industry in Maryland. Today, she has turned her passion toward educating, advocating, fundraising, and raising awareness for children and families affected by CS & TTD. She works tirelessly to bring Cockayne syndrome and Trichothiodystrophy into the mainstream, helping increase awareness within both the medical community and the public while fighting for a brighter future for every family impacted by this rare diagnosis.

Nikki’s dedication is matched by her impressive educational background. She earned triple bachelor’s degrees in Political Science, Sociology, and Psychology, along with an MBA from George Washington University.

More than her accomplishments, Nikki brings compassion, determination, and a relentless commitment to ensuring that no family faces this journey alone. We are incredibly grateful to have her as part of our foundation and look forward to the difference we’ll continue to make together.

Thankful for our amazing BOD! To read more about Nikki, check out our website.

https://www.cockaynesyndromefoundation.org/blog

We are deeply honored to introduce Melissa “Missy” Miller—a devoted mother, tireless advocate, public servant, and a voice of hope for families navigating the challenges of rare and complex medical conditions.

Missy’s journey into advocacy began through her children. After raising two children with complex medical needs and losing her oldest daughter, Melanie, to Cockayne syndrome, she transformed unimaginable loss into a lifelong mission of serving others. Her son, Oliver, has faced a lifetime of medical challenges, and through every obstacle, Missy has continued to advocate not only for him but for countless families walking similar paths.

For more than 25 years, Missy has dedicated her life to healthcare and the wellbeing of children. Through both her professional career and volunteer work, she has educated hundreds of pediatric residents about the social, emotional, and medical realities of caring for children with chronic illnesses, while becoming a trusted source of support for families across her community.

Her advocacy has reached far beyond individual families. As a leader with Compassionate Care New York, Missy played a pivotal role in helping pass New York’s medical ma*****na law, expanding treatment options for thousands of patients living with debilitating illnesses—including her own son. In recognition of her extraordinary leadership, she was honored with the New York State Senate Woman of Distinction Award in 2015.

Missy’s passion for serving others led her into public office, where she was elected to the New York State Assembly before later becoming a Town Councilwoman for the Town of Hempstead. Even after stepping away from the Assembly to care for Oliver during a difficult season, she has remained steadfast in her commitment to serving her community and advocating for those whose voices are too often unheard.

Missy’s story is one of perseverance, compassion, and unwavering determination. We are incredibly grateful for her leadership, her heart, and her dedication to ensuring that every child and every family affected by Cockayne syndrome and Trichothiodystrophy has someone fighting beside them.

Helps us share our wonderful Missy’s story by clicking on the link to learn more about her and our BOD.

https://www.cockaynesyndromefoundation.org/post/melissa-missy-miller

❄️🍂 Become a Sponsor for Our Winter Ball in the Fall 🍂❄️

This year, the Cockayne Syndrome Foundation is celebrating two extraordinary milestones: Lucas turning 18 and Lara turning 16. In the Cockayne Syndrome (CS) and Trichothiodystrophy (TTD) community, every birthday is a powerful reminder of resilience, love, and the precious gift of every milestone.

While this special evening honors Lucas and Lara, it also celebrates every child, every family, and every journey that has brought us together.

The Winter Ball in the Fall is a night of hope, connection, and community—a chance to gather, share stories, honor our children, remember those we’ve lost, and celebrate the strength that continues to inspire us every day.

💙 We are currently seeking sponsors to help make this meaningful event possible.

Your sponsorship will directly support the Cockayne Syndrome Foundation’s mission to provide support to families, raise awareness, and continue advocating for a brighter future for those living with CS and TTD.

As a sponsor, you’ll not only help create an unforgettable evening for our families, but you’ll also show your community that your business stands with children and families facing rare diseases.

✨ Every sponsorship makes a difference!
✨ Every donation brings hope!
✨ Every share helps us reach more hearts!!

We would be honored to partner with you and celebrate this special evening together.

❄️ Sponsorship Form:
https://forms.cloud.microsoft/pages/responsepage.aspx?id=NUnCzqCbsEOSbzNfQMx89ymelw5G5N5Ch9zljs7o-8FUMFoyTFlRVFBJVE5POUxTNEQ4T1dJWktHOS4u&origin=QRCode&qrcodeorigin=presentation&route=shorturl

❄️ Donate here:
https://givebutter.com/winterballinthefall2026

❄️ More info about our Winter Ball in the Fall
https://www.cockaynesyndromefoundation.org/event-details/winter-ball-in-the-fall-1

💚 Warrior Wednesday: Meet Chase

At just 2 years old, Chase is the baby of the bunch, but don’t let that fool you! He may be the youngest, but he definitely rules the house with his big personality, infectious smile, and just the right amount of sass.

Chase loves playing with his older brothers and is always determined to keep up with them. His determination shines through in everything he does—once he sets his mind on something, he doesn’t give up until he gets it.

He also has an incredible memory, recognizing landmarks around town and excitedly pointing them out for everyone to see. It’s one of the many things that makes him so special.

Chase’s smile can light up any room, and his joy, resilience, and spirited personality brighten the lives of everyone lucky enough to know him. We’re honored to celebrate this amazing little warrior today. 💚

To read more about our warriors, please visit https://www.cockaynesyndromefoundation.org/

💚 Meet Geana 🩵

Geana is a registered nurse with a background in critical care and emergency medicine. She earned her Associate Degree in Nursing from Peninsula College and her Bachelor of Science in Nursing from the University of Washington. She also became a Certified Critical Care Nurse in 2019.

More importantly, Geana is the proud mom of Ronin, who has Cockayne syndrome. After his diagnosis, she turned her love for her son into a mission to improve the lives of children with Cockayne syndrome and support the families walking the same journey.

Geana has advocated for medically fragile children in New York State, created the Family Resource Program, spoken at medical conferences, and shared her family’s story on the DNA Today genetics podcast. In recognition of her dedication, she received the 2025 Women of Distinction Trailblazer Award.

When she’s not caring for patients or advocating for the rare disease community, Geana enjoys life in Upstate New York with her son Ronin, their cat, Lana, and Ronin’s Make-A-Wish Bernese Mountain Dog, Amaretti.

Geana’s heart, leadership, and tireless advocacy have made a lasting impact on the Cockayne syndrome and Trichothiodystrophy community. We are so thankful she is one of the founders of the Cockayne Syndrome Foundation.

To read more about our wonderful Geana https://www.cockaynesyndromefoundation.org/about-us!

🩵 Meet Amy 💚

Amy has dedicated more than 25 years to pediatric nursing, with a lifelong passion for helping children. Her experience as a pediatric nurse and Clinical Education Specialist at one of the nation’s largest pediatric rehabilitation hospitals prepared her for her most meaningful role yet, being a mom to three children, including two with Cockayne syndrome.

After her children’s diagnosis in 2015, Amy turned her knowledge and determination into action. She became a driving force for education, awareness, and advocacy, helping families better understand the complexities of Cockayne syndrome so they can confidently care for and advocate for their children.

Amy holds a Bachelor of Science in Nursing from William Paterson University and is a Certified Healing Touch Practitioner. But beyond her credentials, she is someone families know they can turn to for advice, encouragement, and unwavering support.

Amy’s compassion, expertise, and dedication have changed the world for the Cockayne syndrome and Trichothiodystrophy community—and we are incredibly grateful to call her one of the faces of the Cockayne Syndrome Foundation.

To read more about our wonderful Amy and BOD, check out our website. https://www.cockaynesyndromefoundation.org/about-us