AHEAD – Lived Experience Consultation – Paid Opportunity

Lived Experience Consultation – Paid Opportunity


Lived Experience Consultation – Paid OpportunityAHEAD are developing a new collaborative national framework, the WIDE (Widening Inclusion of Disability in Employment) Framework which commenced in August 2023 and is funded by the Department of Social Protection through AHEAD’s WAM Programme

As part of the WIDE Framework project, we are opening a series of consultations (a discussion where you will share your views) to help us shape the framework output.This consultation seeks to better understand the experiences of disabled people who are looking for work and disabled people who are currently employed. How to get involved?If you are interested in being a part of the consultation as a person who identifies as having a disability, we invite you to complete the expression of interest form. You will be informed by email on 25th July if you have been selected or not.  
 When are the consultations?Online –  Wednesday 28th August at 6.30pmIn-Person in Dublin City Centre – Friday 30th August at 11.30amWho should participate?We are committed to transparency regarding the selection of participants. Our guiding selection criteria is as follows;Disabled people over the age of 18Disabled people who are looking for work or disabled employeesDisabled people who represent a range of disabilitiesDisabled people who represent varied educational attainment levels (school leavers, further education, higher education graduates)Disabled people who represent a range of intersectional identities (ethnicity, LGBTQ+, religion, socio-economic status etc.)Disabled people representing a broad geographical spread
More Information / Express Interest in Lived Experience Consultations >>
 Think Twice Workshop – Exploring the Internship Journey! July 17thHelp spread the word about our next employability workshop, providing expert advice and personal experiences to help students and graduates secure and excel in internships. 

The workshop will kick off with an introduction to internships from AHEAD’s own Philip Carroll. Jennifer O’Connor from TCD disAbility Service will then give a talk on the Trinity Internship programme for students with disabilities. We’ll finish the session with a panel discussion featuring Trinity interns sharing their first hand experience of the programme. Workshop Speakers:Jennifer O’Connor | Inclusive Internship Programme Officer with TCD disAbility Service
Philip Carroll | WAM Project Officer with AHEAD When is it?Wednesday 17th of July from 12pm – 1pm on Zoom. This workshop is completely free however spaces are limited.
More Information / Sign up for the Disabled Postgrad Virtual Tea >>
 New Research – Reasonable Accommodations in Further Education & TrainingAHEAD, in collaboration with Education and Training Boards Ireland (ETBI), are delighted to release the results of a SOLAS-funded scoping survey on the provision of Reasonable Accommodations in FET.The report identifies a general culture of inclusion in FET, and notable pockets of good practice in disability support, but also finds significant structural gaps and barriers to the provision of quality, consistent support in the areas of:Reasonable Accommodation PoliciesSystem Funding of SupportsCommunication/Visibility of Available Support ServicesStaffing and Staff Training Concerning Disability SupportsCriteria for Access to SupportsSince the finalising of the report, AHEAD, ETBI and SOLAS have met to discuss the national level recommendations and agreed a series of actions to make progress on a number of the recommendations.Development of practical outputs to support ETBs to implement the ETB level recommendations is already in the planning stage in collaboration with ETBI. It is expected that outputs arising will be released in the first half of 2025.
More Information / Access the Reasonable Accommodations in FET Research >>

Report from the meeting of representatives of national associations of 22q11 deletion syndrome as part of 22q11 Europe

27-28/04/2024 – Brussels


1.           Paul HAVELANGE, 22q11 Europe, Relais22 (Belgia)

2.           Stephane ELIEZ, 22q11 Europe, Connect22 (Szwajcaria)

3.           Maude SCHNEIDER, 22q11 Europe

4.           Maria Silvia RICCIO, Aidel 22 (Włochy)

5.           Julie WOOTTON, Max Appeal (UK)

6.           Paul WOOTTON, Max Appeal (UK)

7.           Hanna VERLAECKT, 22q11 Flanders (Belgia)

8.           Gerd GABRIELS, 22q11 Flanders (Belgia)

9.           Esther CALVO RUIZ, Associatión Síndrome 22q (Hiszpania)

10.         Daniela GRASER, Wir sind 22q (Niemcy)

11.         Vesna VUJIČIĆ, 22q Ex Yu (Serbia)

12.         Magdalena WOJCIECH, 22q11 Polska, 22q11 Ireland (Irlandia)

13.         Mieke VANWEZER, 22q11 Flanders (Belgia)

14.         Paulina GBUR, 22q11 Polska


1) The financial statements for 2023 have been adopted. The minutes from the previous association meeting 22q11 in Dublin have been accepted.

2) GenIDA: a representative of the French private genetic registry of patients with intellectual disabilities presented the GenIDA project. It contains data from approximately 2,000 participants from over 60 countries, based on anonymous data from an extensive but general questionnaire developed by specialists. GenIDA strives to update data regularly. Scientists interested in the data can receive access (for free) and can also request complementation of the data with additional questionnaires or medical documents.

Discussion: we need such a register so that scientists can continue research on 22q11, but our register should be more detailed, i.e. the questions in the questionnaire should be developed by specialists in a given field, e.g. cardiologists, psychiatrists, who also know about 22q11 , and the register should also contain medical documents, test results, and samples (e.g. voice recordings, biological samples). Such a registry can be quite expensive to set up and maintain. Although Stephan Eliez’s experience with the cost of collecting such data and storing it is quite optimistic, the rest of the meeting participants were quite sceptical. A topic for further discussion

3) European Conference 22q11 in Brussels, 22-23/11/2025

The conference will be held in Brussels on the weekend of November 22-23, 2025. There will most likely be no costs for renting rooms or organizing translations, because, as was the case in Dublin in 2023, we will use simultaneous translations offered by e.g. Teams. The ticket price for the participant should not be higher than before, i.e. EUR 60. The conference will not be broadcast live, but after the conference, presentations and short descriptions will be posted on the 22q11 Europe website.

The conference program will be partially divided according to the age of those interested, i.e. there will be separate sessions for children and separate sessions for adults. The topics (Maude Schneider is responsible for the scientific content) are inspired by feedback from participants of previous conferences, and will include, for example, mental problems, sleep, gastrointestinal and orthopaedic problems.

Discussion: It would be good to organize a session allowing participants to have more direct contact with specialists, most likely through the so-called “world café method”, i.e. each specialist would have a table with chairs at his disposal, and participants could sit there and talk. Another issue is the division into age groups – would it be possible to organize separate sessions for young adults (16-26 years old) and other adults (26+)? A topic for further discussion.

Communication about the conference must start early enough, e.g. “save the date”, then an outline of the program, then potential speakers, etc.

Taking advantage of the fact that the conference will be in Brussels, we would like to add a short session to the program with representatives of the European Commission, European Parliament, Eurordis, etc. The aim would be to present to participants what is being done at the EU level in the field of rare diseases, mental health, protective services health, etc. and enabling representatives of institutions to become familiar with the topic of 22q11, making them aware of how many of us there are and what difficulties we face.

4) Communication and awareness raising

The communications team, i.e. an external agency that runs social media accounts, the website and prepares press materials, is responsible for the communication activities of 22q11 Europe.

Discussion: The Communications team asks for topics, stories, photos, videos, podcasts, etc. to enrich our communication at European level. It would be good to exchange such materials between associations. For example, Germans have recorded a lot of videos and podcasts that could be easily translated using mechanical translations and AI. Similarly, MOOCs could be used even more, e.g., shorter fragments translated by AI. Paul would also like to create a common repository of information materials. Every association has something interesting and it could all be kept in one place for use by the European team and national associations.

5) 22q11 Europe goals for 2024-26

The goals are divided into thematic groups, each goal was discussed in separate working groups:

• communication and awareness raising

• adult topics

• cooperation with scientists

• creating a network of specialists

• finances

The topics of adults and finances will be discussed further.

Cooperation with scientists will continue, and it would be best to have more data, e.g. a patient register. The working group agreed to develop a questionnaire for PhD students potentially interested in research on 22q11, in which they would have to describe the topic of their research and indicate what data and information they would need, e.g. publication on association websites to recruit participants. Doctoral students would be required to present the results of their research to our community.

In terms of communication and awareness raising, the 6-person working group (Silvia, Esther, Magda, Mieke, Vesna, Paulina) identified two main areas: communication with the wider public and families, and communication with institutions, politicians, etc.

Broader communication:

Awareness Day and the entire month of November should be better used, there should be more messages and they should be more unified at the European level. We should include the 22q11 Europe logo and tag the European organization in our materials. The Communications team could prepare more materials for use, using existing materials used by national associations. The Communications team should also prepare a guide, i.e. step-by-step actions, ideas, contacts, templates of letters and e-mails, press releases, etc. that would help national associations prepare for Awareness Day and other activities.

Communication should be more regular, not only in November. There is an idea to publish content on social media and websites on the 22nd of each month regarding a specific topic that would be consistent throughout Europe, e.g. on February 22, everyone publishes material about cardiological problems. The Communications team would multiply these messages, combine them and publish them further. Of course, the associations could of course exchange what they have on a given topic beforehand. The list of topics will be developed by the working group. The group will also meet with the communications team as soon as possible to determine the plans and scope of their and our activities. We plan to start monthly campaigns from September 2024.

Communication with institutions and politicians:

Paulina will start organizing meetings with representatives of EU institutions, where Paul could explain 22q11 to them. We should also more actively join the Rare Disease Day organized by Eurordis, events organized by e.g. Mental Health Europe, etc. Maybe we could organize an exhibition of works or a concert in Brussels?

6) Screening – New Born Screening

This is a topic that Eurordis has been heavily focusing on lately. Paul showed preliminary results of a survey conducted by Eurordis (Rare Barometer), and the full report will be available soon. 52 people from the 22q11 community took part in the survey. In general, respondents supported the idea of ​​22q11 screening, with the caveat that parents had the right not to want to know the result.

22q11 Europe would like to continue this topic, so an inquiry was sent to several potential consultants whether they would like to prepare such a project and how much it would cost. After receiving the offers, the Management Board of 22q11 Europe will decide whether we can do something and whether we have the funds to do so.

7) 22q11 duplication syndrome

The German association presented its experience of joining the association for people with 22q11 duplication syndrome, which is more common than deletion syndrome, but the symptoms are rather milder. Few people with duplication are even diagnosed. Those who exist and need support do not have their own group. German experience shows that combining forces brings good results, that you can speak with a stronger voice, e.g. vis-à-vis decision-makers, but also that it is worth maintaining separate events or groups on WhatsApp, at least at the beginning.

Discussion: Opinions are divided because some believe that these are two completely different syndromes, while others believe that there is some similarity – the same chromosome and some similar symptoms (e.g. development of speech, language, communication, autism, ADD, behavioural problems). For now, the topic is under observation.

8) Sharing the experiences of national associations

Ireland: The most important event is the introduction of the “22q11 health passport” – promotional video: https://vimeo.com/909857141. The passport attracted interest from other associations. In addition, there is a program for parents and young adults, promotional videos and other activities. The association applied to the Petsky Gnats program (CBT therapeutic support for young people using the Internet). He runs a specialized 22q11 clinic that is very successful and very useful.

Poland: Presentation of the most important events, including a teachers’ conference, a family reunion, a summer camp, a concert in Krakow and an art exhibition, among others.

Serbia: Activities common to the countries of the former Yugoslavia, as there are no associations in the remaining countries. Limited resources and opportunities, especially lack of volunteers, but they are trying to spread awareness and provide support.

Spain: They organize schools for families, commercial sales, meetings for parents and children, and many promotional activities. The STOP Bullying campaign includes conversations in schools and universities (as part of the education of current and future teachers and other professionals), the material is available online and in a special booklet

(also in English: https://22q.es/docs/files/83_guia-22q11-eng-af-web.pdf ).

Germany: For several years he has been running a very successful program – Media Team – which has won awards in the inclusive media category. With the help of an external media education agency (financing comes from a public foundation from which the association received a grant; in general, they finance their activities largely from grants from public institutions), a group of young people from 22q learns how to use equipment (cameras, microphones, editing programs). and processing, etc.) and conducting interviews, recording videos, etc. The young people are very involved, they also meet on weekend trips and have a group chat. They could prepare materials for next year’s conference in Brussels and for communications on the 22nd of each month.


Belgium/22q11 Flanders: The “Thank you for seeing me” campaign was very successful. They also changed the website and name from Vecarfa to 22q11 Flanders. They organized mini conferences and a one-day meeting of families and a trip to the zoo.

Belgium/ Relais22: They have organized mini-conferences and are launching a young adult group.

UK: They actively raise funds through sponsorship, charity events such as golf matches, participation in runs and others. They use the support of a specially employed person to collect funds. They organize trips to the zoo, children’s camps, and meetings. They changed the logo and renovated the website. They have over 2,500 members and the number is growing very quickly. Unfortunately, the specialist clinics they run are under siege and queues for consultations are very long.

Italy: They run a radio station (https://webradio.aidel22.it /, funds come from a religious institution), where the material and music are prepared by young people from the 22q. This is a job for people without education and without a job, and they also learn how a radio works. They prepare interviews, podcasts, etc. In addition, the association has prepared a guide about 22q, which families going to medical boards (e.g. for a disability decision) can provide to doctors. The guide draws the attention of medical examiners to aspects and symptoms that may not be visible at first glance during a short examination. The association also organizes a camp for young people to learn independence, and raises funds through charity campaigns.

Switzerland: The association is not very active due to the division of the country into regions and different languages, and the fact that the Swiss health care system is very efficient and families do not often seek help further . However, the association provides more individualized help. Experience from recent years: moving the family meeting from physical to online meant that virtually no one came to the physical meeting. They decided to hold only physical meetings.

At the end Paul thank everyone for such a fruitful meeting.

Next year 22q11 Europe associations Meeting will take place in London (date to be confirmed – April/May 2025)

Andy Quinn – Andy’s American Tour 22q article of inspiration

As a 8 year old in May 2013,

I attended my very first 22q day @ the Zoo with my Dad, to find out more about what my 2 week old baby Brother Matthew was just diagnosed with.

Giving him extra fingers, 3 holes in his heart, one missing kidney, facial imbalance, sleep apnoea , low immunity, no parathyroid function, low Vitamin D, creating low calcium, creating cramps and convulsions were the conditions that he had presented with so far by 10 days old from his 22q diagnosis.

We were welcomed by founder of 22q Ireland https://www.22q11ireland.org/ Anne Lawlor at the gates of Dublin Zoo. 

Immediately my Dad got busy chatting with Anne and the other parents desperately trying to find reasons for hope, listening to their stories of success in a 22q way of life.

It was a wonderful sunny day and everyone was really considerate and kind in our new supportive community of 22q Ireland.

11 years on. in May 2024 we are so grateful for all Matthew has taught us about our fragile human condition and the randomness of good health for us all.

I have learnt to believe in long shots and hope from the bottom of my heart that everything will work out in the end, whether in academia or athletics I believe deeply in the ability of our human condition to overcome obstacles and adapt. 

When I was a 10 year old,  I attended a series of sign language courses with my mom Kathy as this was the only way we could communicate with Matthew. At birth the medical experts said Matthew will never walk or talk due to his intellectual and physical disabilities because of his deletion of DNA 🧬 on his 22nd chromosome. The genetic material to create the faculties were simply deleted before he was born. 


Thankfully my parents mantra after our first visit to the 22q in the Zoo in 2013 was we need to support Matthew to be the best he can be, as 22q was his only ticket into the human race to live his life, in his normality. We all wanted to learn how to give Matthew his best chance at learning how to walk & Talk

So we loved him  played with him and wrestled with him until he learnt to move crawl and laugh. Our wonderful speech & language therapist Sinead taught Matthew over years  how to make sounds through the medium of play therapy on our sitting room rug with weekly home visits for years.

By the time he was 5 years old he could hum a tune, we were delighted to hear his voice for the first time and see his satisfied smile as he was learning to express himself and become part of the banter as 1 of 4 brothers in a busy home.

All this time I was a sports fanatic and I too was learning how to express myself through well being Activities & improve my own skillset through opening up my neurological pathways by teaching my nervous system actual memory through movement of my muscles in a similar way Matthews therapists got Matthew to walk and talk through play therapy.

As Matthews 18 year old oldest brother 

I was delighted to attend my last 22q at the zoo as an elite student Athlete with over 20, Division one  American University college football  programmes interested in offering me a scholarship as a student Athlete 

and my inspirational brother Matthew smiling proudly back at me wearing his favourite NFL top as my number 1 fan and motivator. Matthew knows me better than anyone else and he has taught me so much about resilience determination and enjoying the journey of becoming the best version of yourself.

I am so grateful for the supportive love of my family and especially Matthew as he has inspired us all to be the best version of ourselves with a sky is the limit attitude

 of “why not” .

I always wear my 22q awareness wrist band to remind me of the hope filled fun times and block out the times of panic, despair and fear by remembering a smile or word of encouragement from Matthew, the old Hebrew meaning for Matthew is 

” Gift from God”

Watching Matthew develop despite his real 22q disabilities has been a really tangible gift from God for myself to always strive to realise my amazing potential as a human being and help others to learn to help themselves wherever I can.

I’m the American colleges football world,

Currently I am ranked as the 31st best American college football kicker/Punter in the world 🌎 by Kohl’s kicking. Since I became the first European ever to win the Eastern United States 

regional Kohl’s kicking competition in Philadelphia in 2024 my next challenge is to win a spot on the All- American team in California in July ’24 and secure a university scholarship where I hope to study subjects so I can continue to help society to adapt to include people who have needs like my beautiful brother Matthew.

 I hope to continue to develop & draw inspiration from my family and especially Matthew so I can  keep learning how to improve as a human being as I start my journey as

a student Athlete in America. My main off pitch passions are social inclusion through participation in well-being activities as I see how much play therapy has helped developed Matthew socially. Our next big dream for Matthew is independent autonomous living. We hope & pray for this to come through 🙏. 

VHI Women’s Mini Marathon

22q11 Ireland Support Group is now supported by 2024 Vhi’s Women’s Mini Marathon! This means event participants can now create a fundraising project for 22q11 Ireland Support Group at Vhi WMM ’24. When logged in to your charity dashboard, check Reports for the name of the event at which a donation was made. This will allow you to easily track the source of a donation! If you have any questions, please contact our support team. Check out the event’s fundraising page here. Inform your supporters about this event across all channels, encouraging them to take part and fundraise!

22q Young Experts by Experience Panel (YEEP): About Sarah

“Hi, my name is Sarah Fitzpatrick I was diagnosed with de-gorge syndrome when I was 3. I also have scoliosis. I have 22q11 which I’m missing my 22nd chromosome.

I joined a group called Yeep group and I have long life friends I’ve met amazing people along the way who are just like me. I’ve always hated school had been bullied.

I’m now in national learning network and met more new amazing friends and my boyfriend who put up with me. I’ve always struggled to start conversations and how to socialize because I’m very shy person. I’m starting to come out of my shell every since I met these amazing friends of mine who have helped me.

I really struggle with school and it takes me long to learn things more then others but I did go in and put my head down to do the work did my leaving cert and got to where I am today. Even though I hated school I still had to go in and finish it.

It has been really tough but I got through it. I also really struggled to keep friends I have lost some along the way don’t think they really understood me but I am really am happy with myself and blocked those people who have brought me down.

Also, my mam has helped me through so much she is my best friend and always has been there with me I also wouldn’t be where I am today without my mam. I also can’t forget about my dad and my sister who also have been there for me x. This is my story.”

About Siofra and 22q11

22q Young Experts by Experience Panel (YEEP): About Siofra

“Hi, my name is Siofra. When I was born I was diagnosed with 22q11. Deletion syndrome. I find learning hard for me and have a low immune system.

I completed a level 5 course in Ballyfermot college called office administering. Which was hard but I got through it. At the moment I’m currently studying a medical secretary course, getting a lot of assignments but it keeps me going through these tough times.

I also play sports. I play camogie and Gaelic football. But due to Covid all sports are cancelled which is annoying. But now I’m running 5k x3 times a week. My best time is 28 minutes, on average it would be 30 minutes. I picked this up during lockdown.

I also get loads of support from the YEEP group I made so many good friends from there.”