MARC Nolan partners with ULF
Celebrating lIFE'S mOMENTS, oNE STEP AT A TIME.
My name is Isabella; I suffer from Vanishing White Matter (VWM) disease. I have learned that the smallest moments hold the greatest meaning. When you’re living with something as unpredictable and devastating as vanishing white matter (VWM), you start noticing things that most people take for granted. You get excited when your body does something it couldn’t do weeks before. Simple things bring such joy, like being able to hear your friends laugh or when others can actually understand you when you speak.
I show strength each day by choosing to keep going, even when simple things are difficult for my body to accomplish. I try to be a role model by staying positive and not giving in, even when my diagnosis feels overwhelming. I want others to remember that no matter how scary life gets, there is always hope and that keeps me strong.
Wearing Marc Nolan Roxie Mary Jane’s is not only about looking good and great fashion, it’s about feeling like I can make a difference. Every step I take in these shoes (honestly, I can only take a few steps) reminds me that I am stronger than I think, that I am walking for a cause, for awareness and for a chance to make a difference. Knowing that every pair of shoes supports the ULF makes me feel like I am helping other families and kids like me.”
This season, we are honoring Isabella and others who inspire us through their courage. By purchasing from the Marc Nolan Roxie Zebra Print Lug Mary Jane’s and the Gloria Zebra Print Stiletto Ankle Boots collection, you help ensure families affected by leukodystrophy have more moments to celebrate. We encourage you to share Isabella’s story of strength to help raise awareness and to inspire others along the way.
I am Kasey Kuhn. My 5-year-old daughter, Frances, was diagnosed with VWM in June of 2024. Being a mother to a child affected by VWM has truly transformed how I see life’s moments, both the quiet ones and the grand ones. I’ve learned to find profound joy in what others might overlook, moments I used to overlook – a smile, a laugh, a peaceful day. Each moment feels like a gift, a reminder that joy is not measured by perfection or ease, but by presence and gratitude. Through Frances’ journey, I’ve come to understand the beauty of slowing down and embracing life as it comes, trusting the process and finding meaning along the way.
My strength comes from love and from learning to take each day as it comes. There are days that test me: physically, emotionally, and mentally, but I have learned that strength isn’t about never breaking down; it’s about continuing to show up, even when it’s hard.
As a mother, my heart leads the way. As a caregiver, I have found a quiet resilience I didn’t know I had. I’ve learned to balance hope with acceptance, and to lean on the support of others when I need it. Faith still grounds me. As, you help raise awareness and hope for families on this journey. It reminds me that I don’t have to have all the answers, and that there’s beauty even in the hardest parts of this journey.
As we gather, give, and celebrate the season, let’s remember the moments that matter most and help others create more of those moments. When you purchase Marc Nolan Roxie Zebra Print Lug Mary Jane’s and the Gloria Zebra Print Stiletto Ankle Boots collection, 50% of the profits support our mission and by sharing her message, you help raise awareness and hope for families on this journey.
My connection to leukodystrophy comes through a family member who has been affected by Vanishing White Matter Disease.
As both a physician and an artist, I hold two roles that may seem different, but to me they are deeply connected. Medicine and art remind me every day of the miracles around us: our lungs breathing, a floral bouquet or landscapes. When we slow down we can notice the rich beauty of life.
I’m extremely fortunate that my schedule allows me to honor both parts of who I am. One week I’m at the hospital caring for patients; the other, I’m at home creating. My strength comes from knowing I’m a complex human being. No single role fully defines who I am. Life is a series of iterations of ‘me’. I believe in working hard and dreaming harder.
We owe it to ourselves to pursue what lights us up to achieve, to be daring, and to see where life takes us!”
Inspired by this message, our partnership celebrates the courage to evolve, to dream, and to embrace every version of ourselves. When you shop Marc Nolan Roxie Zebra Print Lug Mary Jane’s and the Gloria Zebra Print Stiletto Ankle Boots collection, or share this post you join us in uplifting the women whose connections to leukodystrophy inspire this campaign.
“I have a son with a rare disease; he is what inspires and drives my dedication to research in the leukodystrophy community and gives me a personal connection to this work. I know how much hope even small scientific discoveries can bring, and seeing my colleagues’ dedication to helping others also keeps me inspired. I work in Dr. Bonkowsky’s lab, where we study leukodystrophies. We are working toward gene therapy treatments that could one day improve outcomes for affected patients and their families.” – Julia Wentz
Julia’s story reflects the heart of our partnership with Marc Nolan. When you shop the Roxie Zebra Print Lug Mary Jane’s and the Gloria Zebra Print Stiletto Ankle Boot, you honor Julia’s dedication and support the efforts underway toward achieving scientific breakthroughs in leukodystrophy. Hope for the future. marcnolan.com/collections/marc-nolan-x-ulf
“I am the mother of a IIan, who had a rare disorder, Zellweger spectrum disorder (ZSD). He lived to be 14 months old. My short time with IIan inspired me to serve the rare disease community and study the public health needs of families affected by rare diseases.
Before I had my son, I was afraid to share my voice and my knowledge. When I became Ilan’s mom, I realized that unless I stepped up, he would have no one to speak for him and ensure his life mattered. His short life gave me the courage I needed to be confident for him and eventually for myself, the students I teach and the communities I serve.” – Dr. Mousumi Bose, Associate Professor, Montclair State University.
Our partnership with Marc Nolan “celebrates” Dr. Bose for serving as a role model of courage, strength, and confidence. .
Every purchase of the Roxie Zebra Print Lug Mary Jane’s and the Gloria Zebra Print Stiletto Ankle Boot helps the ULF support families navigating leukodystrophy and the programs that serve those affected.
sPECIAL aNNOUNCEMENT: Marc Nolan partners with ULF
The United Leukodystrophy Foundation (ULF) is proud and excited to announce a partnership with Marc Nolan, a Chicago-based footwear brand, who is launching a new campaign with us “Celebrating life’s moments, one step at a time.” Marc Nolan announced our partnership to their customers today!
Through this collaboration, we will celebrate women in ULF’s community illustrating their strength, compassion, confidence, and gratitude through storytelling, photos, and videos of them “celebrating life’s moments,” while also showcasing Marc Nolan’s collection of zebra stripe shoes, the Roxie Zebra Print Mary Janes and the Gloria Zebra Print Ankle Boot. The campaign will be conducted November 2025 through February 2026, ending with Rare Disease Day.
A partnership with a compassionate and community-focused brand, such as Marc Nolan, aligns with ULF’s mission and values of creating meaningful personal connections to support families affected by leukodystrophy. This collaboration will provide vital resources that will help ULF expand our family support programs and raise awareness about leukodystrophy to a wider audience.
ULF is grateful to Sebastian Malczewski, Marc Nolan CEO & Founder, for his continued commitment to our mission and to the support of our families since 2022 and now in a formalized partnership that will shine a light on leukodystrophy through our “Celebrating life’s moments, one step at a time” campaign.
Thank you for sharing our good news with us and for helping to spread the word about this partnership.
With warm regards,
Diane Fennimore
Executive Director
United Leukodystrophy Foundation
Marc Nolan x United Leukodystrophy Foundation
We are partnering with the United Leukodystrophy Foundation (ULF) to support families affected by Rare Neurological Diseases.
For every sale of the Roxie Zebra Print Lug Mary Jane’s and the Gloria Zebra Print Stiletto Ankle Boot, 50% of profits will go to support ULF as part of their “Celebrating life’s moments, one step at a time” campaign.
“At Marc Nolan, our mission goes beyond creating exceptional footwear; it is about building a community and making a meaningful impact. Having been affected by leukodystrophy within my family, I have been inspired by ULF’s tireless work and the incredible stories of strength and resilience from the families they serve. We are proud to formalize our partnership and use our platform to shine a light on this important cause through our “Celebrating life’s moments, one step at a time” campaign.
– Sebastian Malczewski, Marc Nolan CEO & Founder
About the United Leukodystrophy Foundation
Leukodystrophy is a group of more than 50 rare genetic neurodegenerative diseases that affect infants, children, and adults worldwide. ULF is a non-profit 501(c)3 organization established in 1982 and for more than 43 years has funded research, provided patient and family support, and raised awareness to improve the quality of life for those living with this rare genetic neurodegenerative disease. For more information, visit www.ulf.org
The Significance of the zebra
The zebra is a symbol of rare diseases because in medicine, zebras represent uncommon answers. Medical students have been taught to look for horses rather than zebras when diagnosing patients, meaning they should look for more common diseases first. With 1 in 10 Americans affected by a rare disease, awareness is crucial!
– Sebastian Malczewski, Marc Nolan CEO & Founder