The 2022 22q11 Awareness Day was a blast throughout Europe and beyond ! Local organizations displayed an impressive level of creativity in finding ways to bring the public’s eye on the least-known yet frequent, genetic disorder. As is the tradition, many buildings were lit in red to raise awareness in the public space, but the context of energy saving policies have pushed us to look for other ways to raise awareness.
Why are we doing this ?
Letting the public and health professionals know about this disease on a large scale is crucial, because leads an earlier diagnoses. An early diagnosis of 22q11 can lead to a much better life for affected individuals as earlier treatments of symptoms can curtail their severity. Besides, it allows parents to better prepare the arrival of their child, it helps health professionals to better adapt their treatments and educators to better adapt the educational environment. Yet, due to the lack of knowledge about the syndrome and its symptoms from the public and from health professionals, 50% of 22q11 patients are never diagnosed.
Overview of actions accross Europe
We are very proud of all organizations throughout Europe, each acting with the resources they have, all contributing to a common objective or raising awareness. In this article, we highlight the actions of organizations, especially the new ideas that may inspire others !
- Vecarfa (Belgium)
- Asociación Síndrome 22q Andalucía (Spain)
- 22q11 Polska (Poland)
- Max Appeal (UK)
- Relais22 (Belgium)
- Asociación Síndrome 22q (Spain)
- 22q11 Ireland (Ireland)
- Stichting Steun 22q11 (Netherlands)
- 22q11 Finland ry (Finland)
- Aidel22 (Italy)
- Génération22 (France)
The month of November 2022 was also tremendously important for Vercafa, the local association for Flemish-speaking Belgium. First of all, they launched their new website, www.22q11.be, which will certainly help spread information and awareness.
On top of it, Vercafa also had a great idea for a new campaign, which is also the tagline for the website: “merci om mij te zien” (“thank you for seeing me”), with the hashtag #MERCIOMMIJTEZIEN. In this campaign, members received a package of 3 postcards which could be sent to medical personnel, family and friends but also to politicians. The philosophy of this campaign is to thank those who see the needs of 22q11, who support 22q11, who see people with 22q11 as more than just the 22q11-label, but also create awareness: “if some people already see us, why haven’t YOU seen us yet?”.
The Professor Ann Swillen received hundreds beautiful cards #merciommijtezien in her office:
You can find more images on their Instagram: instagram.com/22q11.be .
Asociación Síndrome 22q Andalucía (Spain)
In Andalusia, the 22nd of November was an amazing day. They were able to light up many buildings in red, and overview is on this video. Asociación Síndrome 22q Andalucía also encouraged many people in schools and homes to take videos and pictures of themselves in red, and communicated heavily via social media, radio, television, and the hashtag “Iluminateporel22q”. This video gives a great overview of these actions. Here are some pictures of buildings in red in Andalucia:
22q11 Polska (Poland)
November 2022 was an important month for 22q11 Polska: they organized the First National Conference on 22q11 in Poland, for Educators, School counselors and teachers. The Conference “Children with 22q11 Deletion Syndrome in a Polish school” was free and took place in Warsaw on November 18th, and hosted around 200 attendees ! They heard speeches from 10 speakers from the medical, scientific and educational world, as well as families.
Besides, 22q11 Polska had the great idea to run a new campaign: #22q11gottalent (#22q11matalent) ! The purpose is to showcase the talents, abilities, passions and strengths of children, youth and adults with 22q11. They received pictures from many kids showing their musical talent (playing piano, guitar), art talent (drawing, sketching) and telling us about their hobbies and strengths. It was a very motivational action. Here are just some examples :
Max Appeal – UK
In the UK, Max Appeal shared beautiful pictures of public buildings lit in red, such as the Renfrew Town Hall (left), and the Bascule Bridge (right)
Relais22 – Belgium (FR)
In French-speaking Belgium, just like in Dutch-speaking Belgium, focused its efforts on online communication rather than physical illuminations. Hospitals and municipalities around the country shared information and raised awareness, and some put on their red lights, such as the municipality of Woluwe Saint-Pierre in Brussels, with the Montgomery Roundabout.
Asociación Síndrome 22q – Spain
In Spain, Asociación Síndrome 22q in many ways ! One of them was to organize a conference for future nurses about 22q11, in the University of Vitoria-Gasteiz. Also, they published videos on the occasion, such as this absolutely lovely video with children affected with 22q11, as well as that one video with Spanish actor Angel Martin Gomez. Last but not least, more than 25 cities lit buildings in red on the occasion of the 22q11 day. Here are few few pictures:
22q11 Ireland – Ireland
In Ireland, 22q11 Ireland organized an “Ask the Expert” series in honor of the 22q awareness month. In this activity, several experts from the Foundation Medical Advisory Board around the world answered questions from the public. Here are some examples:
On top if it, they shared pictures of buildings lit in red in Ireland, such as the Belvelly castle in Cobh (left)
Stichting Steun 22q11 – Netherlands
In The Netherlands, it was not just a day, but a whole week of awareness, with the theme “Ik heb 22Q11” (I have 22q11). During this week, Stichting Steun 22q11 brought us 5 video with stories about children with 22q11 and a couple of their many symptoms. Below, the faces of the superheroes who manage to live with 22q11, along with Superaap Sammie, the Dutch mascot.
The mascot Superaap Sammie can be purchased to support Stichting Steun 22q11.
22q11 Finland ry
As always, the Finns from Finland ry made our day bright with their energy and creativity on the 22q11 day. Throughout the whole month of November, they shared joys and successes of children, teenagers and adults with 22q11, is shown on the left.
And on the 22nd of November, the 22q11 awareness day, 28 buildings in were lit in red in the snowy landscapes of Finland :
Aidel22 – Italy
In Italy, Aidel22 did a great job in encouraging the municipalities to spread awareness and share the MOOC Online. New idea: they called on the pharmaceutical company IGEA to share information on their website, as well as on their social media. Also, municipalities lit buildings in red throughout the country:
Just like other organizations, Génération22 in France focused on dressing up in Red during the 22q11 with the campaign “tous en rouge” (all in red), which gave us heartwarming pictures.
Last but not least, other cities beyond Europe have participated to the 22q11 awareness day ! This is the case of Philadelphia, with the Children’s Hospital of Philadelphia (left)