About the IF International Youth Group SBH

It is a pleasure to introduce you the IF International Youth Group SBH including the following members: Kateryna Shcherbyna (Parents Association for Spina Bifida and Hydrocephalus ‘Lights of Spirit’, Ukraine), Laura Rosillo Beneyto (Individual member from Spain), Ajok Proscovia (Spina Bifida and Spina Bifida and Hydrocephalus Association of Uganda, SHA-U), Rereloluwa Adeolu (Individual member from Nigeria), Mirela Bukovac (Croatian Association for SB ‘Aurora’), Malik Armughan Ali (Spina Bifida Foundation Pakistan), Rebecca Austin (Individual member from Australia), Samuel Opeyemi (Festus Fajemilo Foundation), Patrícia Albertová (Slovenská spoločnosť pre spina bifida a/alebo hydrocefalus, o.z.), Nebiyat Testafaye (ReachAnother Foundation, Ethiopia), Jurn Anthonis (Vlaamse Vereniging voor Spina Bifida en Hydrocephalus vzw), Chen Miaohua (Taiwan Spina Bifida Support Association), and Harichandana Mynampati (Spina Bifida Foundation India).

The primary aim of the group is to bring a group of young people with Spina Bifida and/or Hydrocephalus (SBH) together from all around the world who want to work together with IF in addressing important issues relevant for youth with SBH around the world.

How to join the IF International Youth Group SBH

Are you someone with Spina Bifida and/or Hydrocephalus and interested in working for youth empowerment? Then please contact us at [email protected].

Read more about the work of the IF International Youth Group below. 

Activities 2024

• Joining the 30th International Conference 

The 30th International Conference on Spina Bifida and Hydrocephalus will take place in Kuala Lumpur, Malaysia on October 24-26, 2024. The Youth Group representatives Kateryna Shcherbyna and Nebiyat Tesfaye will moderate the Youth Forum: Stronger Together. It’s a great opportunity for youth attending the Conference to share experiences about living with SBH in terms of Mental Health.

• Organised the International Youth Day webinar

To promote awareness about the International Youth Day and to engage the Youth SBH Community in this worldwide celebration, the IF International Youth SBH Group organised a webinar on mental health that counted with the participation of several members of the IF Youth Group and the special participation of an expert on mental health. The webinar expanded on mental health as it relates to the experiences of the Youth with SBH, and their specific challenges and concerns, and at the same time, the webinar promoted and served as a platform for meaningful exchanges and the highlight of inspirational stories. See the recording of the webinar here.

• Joined the International Youth Day 

On the International Youth Day 2024 taking place on 12 August the IF International Youth Group SBH organised a social media campaign and extended an invitation to all young people with SBH around the globe to amplify the voices of the youth. Particularly, the group launched a social media campaign and aimed to raise awareness on one of current youth issues around the world: Mental Health Matters.

To prioritise the key theme for this year’s International Youth Day the IF International Youth Group SBH selected six topics as focal areas for which youth around the world was asked to vote on through a survey (available in English, Dutch, Spanish, Ukrainian) : 

1. Intergenerational Learning. 
2. Disability Acceptance. 
3. Family Support. 
4. Empathy and Bullying at School.
5. Mental Support Within the Public Healthcare Systems. 
6. Personal Relationships, Sexuality, and Family Planning. 

This participatory online consultation gave the necessary input to determine this year’s topic of which resulted in “Disability Acceptance” as the most voted topic. 

• Meet & Greet: Youth & Ageing with SBH

Based on the needs of members, IF organised a ‘Meet and Greet’ meeting in May 2024 as part of the ongoing webinar series on Mental Health & Urological Management. This meeting aimed to facilitate a collaborative discussion between members of the IF International Youth Group SBH and the IF Working Group on Ageing with SBH, where there was the opportunity to share insights and perspectives on mental health and urological management. 

• External representation

There were several opportunities where members of our youth group participated in external meetings representing the needs of our global youth community. They had the opportunity to participate in meetings organised by the following partners: International Disability Alliance (IDA), EURORDIS – Rare Disease Europe, European Disability Forum (EDF), European Youth Forum (EYF), Mental Health Europe (MHE), World Health Organization (WHO).

Activities 2023

• Joined the International Youth Day 

Reflecting on International Youth Day 2023, the IF International Youth Group SBH proudly highlighted their united efforts in raising awareness about Independent Living. On August 12, youth with Spina Bifida and Hydrocephalus worldwide joined forces to challenge misconceptions and share their unique perspectives. Their social media campaign encouraged participants to submit videos, stories, or images expressing what independent living means to them, utilising specially designed IF frames. The IF International Youth Day toolkit provided valuable insights in English, Spanish, and Portuguese. The success of the campaign, evident in the creative contributions and shared experiences, demonstrated the impactful advocacy of the IF International Youth Group SBH and the broader SBH community. See the toolkit here. 

• Participated during the International Day for Persons with Disabilities

To celebrate the International Day of Persons with Disabilities IF joined the European Day of Persons with Disabilities 2023 Conference in Brussels. The IF community, including the youth members, were well represented and committed to defend the rights of persons with SBH. Check out IF Social Media for more!

• Participated during the IF COSP16 Side Event ‘Reaching Out Together’

On June 16, 2023, IF hosted a significant side event during 16th Conference of States Parties to the Convention on Rights of Persons with Disabilities (COSP16) titled ‘Reaching Out Together: Advancing Rights-Based Advocacy in Underserved Communities through Transnational Twinning’. During this event, youth members Ajok Proscovia and Kateryna Shcherbyna discussed the challenges and empowerment initiatives for youth with SBH in different countries. Ajok shared empowering initiatives in Uganda, while Kateryna shed light on difficulties faced in Ukraine. Both speakers emphasised the need for improved support systems and inclusive measures to enhance the quality of life for individuals with SBH. The Chair of the IF International Youth Group SBH, Laura Rosillo Beneyto, highlighted their work on independent living, providing a safe space for young individuals with SBH to share experiences, address challenges, and advocate for their rights. The group actively engages in policy advocacy, raises awareness, and promotes the talents of young people with SBH. Rewatch their talk here. 

• Joined the WSBHD23 Conference Accessibility4All

As a first part of this presentation, we had the pleasure of listening to the amazing story of Angel Wanjiru Ngugi, a 16 year-old singer with hydrocephalus from Kenya. Reflecting on the outcomes of their WSBHD23 side event in Africa, Ajok and Nebiyat shed light on the persistent challenges faced by individuals in Uganda, Nigeria, and Ethiopia. They highlighted the fact these countries still do not meet their accessibility needs. Persons with SBH from these places face inadequate access to education and employment, as specialised facilities are limited.  They also stressed on the need for rehabilitation, as in Ethiopia there is a high rate of child mortality due to the lack of care. Rewatch their talk during the conference here. 

• Organised the WSBHD23 Side Event Youth 

As part of the WSBHD23 celebration, the IF International Youth Group SBH organised their side event focusing on the theme of ‘Accessibility to Independent Living’. Each specific topic was delved into at a deeper level by the youth members, these included accessibility to employment, education and healthcare. The WSBHD23 Youth Side Event successfully illuminated the challenges and triumphs in the pursuit of a more accessible and inclusive world for individuals with Spina Bifida and Hydrocephalus. Rewatch their side event here. 

• Chaired the WSBHD23 Side Event Africa 

Chaired by two youth members, Ajok Proscovia and Nebiyat Tesfaye, the WSBHD23 Regional Side Event Africa was a success! Ajok and Nebiyat shed light on the persistent challenges faced by individuals in Uganda, Nigeria, and Ethiopia. They highlighted the fact these countries still do not meet their accessibility needs. Persons with SBH from these places face inadequate access to education and employment, as specialised facilities are limited. They also stressed on the need for rehabilitation, as in Ethiopia there is a high rate of child mortality due to the lack of care. Rewatch their side event here. 

• Participated during the WSBHD23 Side Event Europe 

As part of the WSBHD23 Side Event Europe themed ‘Current Status on Accessibility in Europe’, youth member Jurn Anthonis stressed the importance of experiential learning for independent living, citing youth camps as valuable platforms. He shared his experiences and announced the WSBHD23 Youth Side Event, focusing on ‘Accessibility to Independent Living’. Rewatch Jurn’s talk during the side event here. 

• Participated in IF’s Webinar on Women with Disabilities in Conflict and Crisis

On April 21, 2023, the International Federation for Spina Bifida and Hydrocephalus held its spring webinar titled “Women with Disabilities in Conflict and Crisis” with the aim of better understanding the risks and vulnerabilities faced by women in conflicts and crises as well as the opportunities and resources available to support women and girls with disabilities who are impacted by conflicts and crises. Kateryna Shcherbyna represented the IF Youth Group SBH and Parents Association for Spina Bifida and Hydrocephalus “Lights of Spirit”, Ukraine. Kateryna spoke about war and how this affects women with disabilities in Ukraine. She also emphasised on double discrimination of women on the basis of gender and disability. See the recording of the webinar here.

• Represented the SBH Community in IF Partner Organisations 

The IF youth members were also frequently involved in activities of external partner organisations. Examples of such organisations include the European Disability Forum (EDF), the European Network for Independent Living (ENIL), the United Nations (UN), the European Organisation for Rare Diseases (EURORDIS), and the European Patients Forum (EPF). Youth members took part in meetings, trainings, workshops, and conferences of these organisations to share the perspectives of the Spina Bifida and Hydrocephalus community.  

Activities 2022

• Joined the Freedom Drive March by ENIL in Brussels

The International Federation for Spina Bifida and Hydrocephalus (IF) and IF Youth Group joined the Freedom Drive organised by the European Network on Independent Living – ENIL where over 200 disability activists march between Cinquantanaire and the European Parliament to demand an end to institutionalisation and the right to independent living.

• Contributed to the IF Statement on Independent Living

The IF Youth Group contributed to the IF Statement on Independent Living in order to ensure the voices of the youth with SBH were reflected. In this statement IF outlined how independent living is enshrined in international human rights law, its interpretation and implementation and how that relates to the main concerns of the global SBH community, as identified by the IF International Youth Group. Concluding with recommendations to policy makers and all those involved in supporting people with SBH on how to advance the right to independent living for the SBH community worldwide.

Download the IF Statement on Independent Living here.

• Joined the Global Campaign on the International Day of Persons with Disabilities

The IF Youth Group participated in the global campaign on the International Day of Persons with Disabilities on December 3rd to wrap off the year by expressing their views and personal messages on the IF social media. 

To view the social media messages of the group, see here

• The 29th International Conference for Spina Bifida and Hydrocephalus Pre-Conference Workshop for Youth

On the occasion of the 29th International Conference for Spina Bifida and Hydrocephalus – Diverse Needs, Same Rights, IF in collaboration with the European Network on Independent Living (ENIL), organised a pre-conference workshop on Independent Living taking place on September 5.  During this workshop youth will be empowered to advocate for their rights to live independently.  Register for the event here.

• International Youth Day & Awareness Month

The International Youth Day is an annual awareness day taking place on August 12 designated by the United Nations. This day is an opportunity for governments, organisations and individuals to focus their attention on various issues faced by young people around the world.

The IF International Youth Group SBH welcomes the full month of August as an awareness month during which a social media toolkit was designed by the IF Youth Group SBH.  This year’s theme is independent living. In this social media toolkit, you can find key information about the International Youth Day, infographics to download and share on your social media for an active campaign on this memorable day, and an exciting challenge for all youth with SBH to participate in. Download the toolkit here.

The IF International Youth Group’s chairman, Cillian Dunne sent a letter to invite the youth community for the campaign, which you can see here.

Also, around this day, IF Youth Group SBH invites all youth with SBH to attend the youth community meeting “Independent living in your eyes” on August 11 2022 at 2pm  (Brussels Time, CEST). For this meeting the IF Youth Group SBH facilitates a platform where all youth with SBH can freely share their thoughts and their experiences related to the topic of independent living. This is an experience exchange and twinning opportunity for youth with the SBH community, with the participation of 5 inspiring youth representatives from Africa, Asia, Oceania, Latin-America and Europe. More information of the meeting here

• Meet & Greet with Vangelis Koutalianos

On February 25 2022, the IF International Youth Group held a Meet & Greet with Vangelis Koutalianos, a true motivational speaker born with Spina Bifida.

During this event, young participants had a chance to listen and chat with Vangelis Koutalianos. He shared with all the participants lots of interesting and inspiring life stories.

The event was very successful with lots of positive feedback from the participants. They expressed their interest and gratitude for having an occasion to learn from an experienced person with SBH and get inspired to live their best lives. They would like to proceed with these activities in the future.

If you want to learn more about the event, please click here

Activities 2021

• Mental Health

Maintaining a good Mental Health especially in times of a global pandemic is of utmost importance. The  IF International Youth Group develops a survey to build up a solid basis of evidence on what is important for young people with SBH about their mental health. This survey addresses the following aspects General Well-Being; Exercise/sports; Friendship/Relationship; Daily activities (e.g, employment, studies); Physical Health; Body Confidence. 

• Raising Awareness during the International Youth Day 

On August 12, IF together with the United Nations, members and partners celebrated the International Youth Day through a wonderful campaign on social media.

The International Youth Day is a special day for the young community to express themselves. On this occasion, the IF International Youth Group created a toolkit and challenged members to take part in their “Pandemic through the eyes of a young person with SBH” challenge which encountered great success!

The IF International Youth Group’s chairman, Marcus Ward, sent a call on IF Social Media Channels, which you can see here.

The IF International Youth Group in collaboration with the Argentina Youth Group shared personal messages on IF Social Media, see here.

Check IF Social Media out for more!

• The International Conference on Multidisciplinary Care for SBH

IF International Youth Group Chairman, Marcus Ward, shared the results of the Mental Health survey the group conducted earlier this year.

He emphasised on the fact that overall mental health and well-being are important and a special attention needs to be given to youth with SBH. It is necessary to improve the tools used to assess the needs of young adults with SBH.

If you want to learn more about the conference and the speech of IF International Youth Group, Marcus Ward, click here

• Raising awareness during the World Mental Health Day

On October 10th, the world celebrates the important topic of Mental Health. The Day provides an opportunity for individuals with SBH, their families, IF member associations, and healthcare professionals working on mental health issues to talk about this important topic.

Together we can assess needs to make mental health care a reality for people worldwide.

The IF International Youth Group, shared a toolkit, their personal testimonies, thoughts and view on Mental Health and through social media, participated on this day to raise awareness on Mental Health among young adults with SBH. Check out IF Social Media accounts (@IFSBH) to see more about their personal messages.

• “Digital Escape Room – Unlock Your Rights” WSBHD21 side-event

On October 29th, to celebrate the World Spina Bifida and Hydrocephalus Day, the IF International Youth Group held the “Digital Escape Room – Unlock Your Right to Health” side-event. Participants had to work together to solve a series of clues. Once a group had found all of the clues it was let into the main zoom room. The first group to find all of the clues were the winners. The event was timed. Participants had 40 min to escape the digital escape room.

See more information about the Digital Escape Game here

• E-Collaboration between the IF International Youth Group and EDF Youth Committee to celebrate the European Day of Persons with Disabilities 

On the occasion of the European Day of Persons with Disabilities 2021 (#EDPD2021), the IF International Youth Group and EDF Youth Committee sent key messages highlighting the situation of thousands of young people in Europe who are at greater risk than other groups. The two groups called on the European Commission to dedicate the European Day of Persons with Disabilities in 2022 to young people to celebrate the European year of youth. 

See more information about the collaboration here 

Check IF Social Media out for more!

• IF Report “Mental Health Implications of COVID-19 on Youth with Spina Bifida and Hydrocephalus- an explorative survey conducted by the IF International Youth Group with SBH” 

This year the members of the IF International Youth Group with SBH wanted to focus on a topic really important for the youth with SBH, “Mental Health”, especially in times of a global pandemic where different challenges impacted sorely mental health. The impact of the COVID-19 pandemic on mental health has been and is widespread and complex.

In 2021 youth with SBH developed an online survey to address needs in the SBH community. The IF International Youth Group SBH shares with you their report on mental health implications of the COVID-19 pandemic among youth with SBH.

Download the “Mental Health Implications of COVID-19 on Youth with Spina Bifida and Hydrocephalus” report, an explorative survey conducted by the International Youth Group with SBH.

• IF Statement on Mental, Physical and Sexual Health for Youth with SBH

Mental, physical and sexual health and disability rights are irretrievably interconnected topics of which the International Federation for Spina Bifida and Hydrocephalus (IF) has been advocating on.

In this statement IF presents the main conclusions of this work by the SBH youth community and the IF International Youth Group, the challenges that persons with SBH encounter in regards to mental, physical and sexual health and IF’s recommendations for advancing the rights and wellbeing of persons with SBH in regards to mental, physical and sexual health.

Download the IF Statement on Mental, Physical and Sexual Health for Youth with SBH.

If you have any questions, don’t hesitate to contact the chair of the IF Youth Group SBH at [email protected]