SMA Europe Youth Group
In focus
A youth driven advocacy initiative
The SMA Europe Youth Group is a volunteer-led initiative dedicated to empowering and connecting young people with Spinal Muscular Atrophy (SMA) across Europe and beyond. We provide a comfortable and inclusive space for young individuals living with SMA to share their stories, advocate for change, build meaningful friendships, and speak up on the issues that matter to them. Our mission is to increase the visibility of young people with SMA, address their specific needs, and promote their active participation in both the SMA community and wider society.
Our group promotes accessibility, inclusion, and youth empowerment through awareness campaigns, creative projects, and collaborative events.
THANK YOU!
This initiative is powered by the incredible energy and dedication of the Youth Group team.
Thank you for your passion, creativity, and commitment to making a difference! 💜
Youth Group Members
- Lucia Pilkova
Slovakia - Amelia Kwiecinska
United Kingdom - Nicole Padayachee, Iman Casoojee & Zintle Sidzamba
South Africa - Jane Velkovski
North Macedonia - Seda Karakaya, Ilgaz Çığgın, İpek Yurtoğlu, Emin Mert Çatkaya & Kardelen Yeşilırmak
Türkiye - Ilia Nikolaev & Danila Feinstein
Russia - Orestis Sevastopoulos
Greece
Join us!
Join SMA Europe’s Youth Group!
Are you aged between 16 and 24 years old and living with SMA? We’d be delighted to welcome you to our growing community!
Here’s what you can look forward to:
✨ Share your creativity and help shape our social media presence
✨ Collaborate with peers to launch exciting projects and stay connected
✨ Make your voice heard in advocacy and awareness efforts
✨ Develop your skills in communication, leadership, and activism
✨ Be part of a diverse, supportive group — there’s no need to speak perfect English!
Participation is entirely voluntary and fully flexible — we understand that everyone’s situation is unique.
Ready to connect, create change, and make a difference?
📩 E-mail us at comms.support@sma-europe.eu to learn more and get involved!
SMA Europe Youth SMArt TV Episodes
Let's create awareness with young minds!
Episode 5
Episode 4
Episode 3
Episode 2
Episode 1
Acknowledgments
This Youth Group is supported by Emilia Debska, Communications and Marketing Manager at SMA Europe. As the creator and coordinator of the group, Emilia has provided continued support, vision, and guidance to ensure young people with SMA have a strong platform to be seen, heard, and empowered.
Contact Emilia: emilia.debska@sma-europe.eu
We are also happy to recognise Seda Karakaya as the leader of the Youth Group. Seda plays a central role in coordinating the group’s activities, encouraging collaboration, and amplifying youth voices within the SMA community with empathy, determination, and leadership. As a young woman living with SMA herself, she brings first-hand insight, lived experience, and advocacy to her role.
Contact Seda: comms.support@sma-europe.eu
Their joint leadership ensures that the Youth Group remains inclusive, youth-led, and firmly grounded in the real-life experiences of young people with SMA.