Seven Seas: Duchenne Japan now WDO Aspiring Member

We are pleased to announce that Seven Seas has joined the World Duchenne Organization (WDO) as an aspiring member from Japan. Nana and Kai, with their shared vision and determination, are making a significant impact on the lives of patients and families affected by Duchenne Muscular Dystrophy (DMD) in their home country.

 

Seven Seas: Duchenne Japan

 

Nana, whose name means ‘#7’, is a devoted mother to a son diagnosed with DMD. Her journey as a caregiver has been filled with challenges and uncertainties. When she received the diagnosis, she felt isolated, fearful, and confused, desperately seeking answers and support. Inspired by her own struggles, Nana has dedicated herself to building a community of patients and families in Japan.

Kai, a true DMD warrior, joins Nana in their shared mission. His name, meaning ‘the sea,’ symbolizes the vastness of their aspirations. Having faced the difficulties of living with DMD without direct family support, Kai understands the challenges this brings. He is determined to utilize his experiences to empower others and foster independence.

The ‘7 Seas’ duo connected on Twitter. There, they shared their common dream of creating a strong and supportive community for DMD patients and families in Japan. Leveraging social media and online platforms, they began connecting with families facing the daily challenges of raising a child with DMD.

 

Key objectives

 

Reflecting on her personal journey, Nana shares, “As a mother, receiving the DMD diagnosis was the most difficult time in my life. I felt alone, scared, and lost, desperately searching for answers. Seven Seas aims to ensure that no family feels isolated. It provides a safe space to connect, inform, share, and encourage one another in this battle against DMD. Raising awareness about this disease and the supportive community fighting against it is one of our key objectives.”

Likewise, Kai adds, “My goal is to support DMD patients in living the best and most independent lives possible. I understand the challenges of living without direct family support and wish to empower patients and families by sharing my experiences. Together, we can navigate the complexities of this condition and help each other thrive.”

The dreams of Seven Seas Duchenne Japan know no bounds, similar to the vastness of the world’s seven seas. Today’s technology allows us to connect with people from all corners of the globe, crossing geographical limitations. Seven Seas envisions a future where patients and families in Japan are not confined to a bubble of isolation but are aware of the world’s opportunities.

Having spent a decade in France, Nana wants her son to see the world and the possibilities it holds. She believes that by encouraging her son to dream, hope, and fight against DMD, he can unlock his potential.

 

Perseverance is key

 

Kai recognizes the power of the internet in connecting and supporting individuals. He aims to learn from those living with Duchenne outside Japan while sharing the experiences of the DMD community in Japan. Additionally, he wishes to inspire people with rare diseases, reminding them that hope should never waver, and that perseverance is key.

With Seven Seas Duchenne Japan as a part of the WDO, the Duchenne community gains valuable insights from their experiences. Their commitment will undoubtedly contribute to the collective journey against DMD.