How it began

Elysium is the first noma survivors’ association founded in November 2022.

We actively advocate for increased attention and support for noma. As part of our efforts, we’ve specifically contributed to the collective efforts toward the recognition of noma by the World Health Organization as a neglected tropical disease. Despite noma being known since ancient times, knowledge about it and its detection still remain too limited. With up to 90% of those affected dying in just a few weeks, the rare survivors face its physical and psychological consequences.

We chose the name ‘Elysium’ because it represents the final resting place of heroes. We are committed to honouring the memory of those who did not survive noma and endured unimaginable suffering. We hope that they will find peace and happiness in the Elysian fields.

What we do

  • Raise awareness

    Raise awareness

  • Promote an holistic approach

    Promote an holistic approach

  • Support survivors

    Support survivors

More

Who we are

Mulikat Okanlawon
President & Co-Founder

Born in Lagos, Nigeria, Mulikat Okanlawon is a noma advocate and a noma survivor raising awareness at the global level. In 2022, she co-founded Elysium, the first noma survivors’ association.

Her story has been featured in the award-winning documentaries Restoring Dignity (52 min.) and Surviving noma (4 min.30) and in several major local and international publications. In 2022, the World Health Organization highlighted her as one of the seven people who are ‘Making a Difference on Health’ in Africa. In 2024, TIME named her one of the 100 individuals who most influenced global health this year.

Mulikat lives in Sokoto, in the northwest of Nigeria, and works as a health promotion officer with Médecins Sans Frontières / Doctors without borders (MSF) at the Noma Hospital. She survived noma as a child and she first arrived in Sokoto along with her father while seeking medical care. The initial infection destroyed the tissue on the left side of her face, affecting her mouth and her cheek up to her eye. As a teenager and young adult, Mulikat underwent several reconstructive surgeries and started to accept what happened to her. In parallel, she learned Hausa and got her first job at the very hospital before completing a degree in health record management.

Mulikat has dedicated her life to supporting other noma survivors. She insists on sharing a message of hope: There is ability in disability, and thanks to more awareness, noma can be eradicated.

Valter Muendane
Elysium representative in Mozambique

Born in Maputo, Mozambique, Valter (Vava) Muendane is a noma advocate who joined Elysium in February 2024. He was affected by noma when he was 10 years old and lived for over three years with a bandage on his face, protecting his wounds that his mother had learned how to clean.

This is thanks to the public appeal of a local organisation, Luz Verde, that Valter got in touch with a lady called Anne. She made it a personal battle to fight for him, hoping his nose can be reconstructed in Portugal where she was based. He spent his 14 birthdays there, but ultimately, he was not able to receive surgery and had to go back home.

It’s only a few months later that Valter was able to receive surgery in Ethiopia. Travelling by himself at 14, he recalls a frightening experience but also an ‘adventure’, giving him the opportunity to learn a new language, English, and meet many new friends who had been through the same, terrible, experience of surviving noma.

Inspired by his experience, Vava is now a certified nurse supporting his patients every day. He is also a proud husband and father who is determined to do anything he can to provide for his son, Maycon, and makes sure he doesn’t suffer the way his father did.

Claire Jeantet
Board Member

Award-winning documentary filmmaker, Claire Jeantet is passionate about creating content with meaning and depth. She co-founded in 2008 the French production company Inediz along with Fabrice Catérini. Focused on long-term visual work, she captures the daily lives of resilient people transformed by a key moment. Believing in the power of stories to change the world, she collaborates with media, international organizations and NGOs. Her main field of interest is social issues, with a focus on refugees, women’s rights and access to health care. 

Claire met with Mulikat Okanlawon in 2016 in Sokoto, Nigeria and Mulikat is featured in the two documentaries that Claire co-directed and produced about the journey of noma survivors, Restoring Dignity (52 min.) and Surviving Noma (4 min.30). Translated in ten languages, her films on noma have been screened in over 100 international events. They have been selected in 26 festivals and won several awards.

After managing Médecins Sans Frontières / Doctors without borders (MSF) noma campaign successfully, Claire is still very much involved in raising awareness on this preventable and treatable disease and advancing the advocacy agenda. In addition to her collaboration with Elysium’s co-founder, she is involved in the collaborative project ‘The Politics of Disease Framing: Surviving and Overcoming Neglect’ together with other researchers from the Center for Applied Human Rights at the University of York and has been collaborating closely with other researchers and organisations working on noma.