The “Talk TO me, not ABOUT me” campaign

The “Talk TO me, not ABOUT me” campaign

Fighting prejudices with respect, empathy and open-mindedness

In September 2022, the association and national alliance representing people affected by a rare disease in Luxembourg ALAN – Maladies Rares Luxembourg, launched a new interactive awareness campaign with the support of its partners, the associations EDS Lëtzebuerg, den-i, Wäertvollt Liewen,  Trisomie 21 Lëtzebuerg, Een Häerz fir kriibskrank Kanner and Fondatioun Kriibskrank Kanner.

 

The campaign aims to raise public awareness of rare diseases and their impact by shedding light on the prejudices that people affected by a rare disease sometimes face. At the same time, the campaign shows that despite many challenges, these people can lead absolutely fulfilling lives.

 

The campaign videos and slogan “Talk TO me, not ABOUT me” (“Schwätz mat mir, net iwwert mech” in Luxembourgish) call for respect, empathy and open-mindedness. The public is asked to put their prejudices aside and openly talk to others to get to know them and understand their situation instead of judging or demeaning them.

 

The campaign has two related components:

– the original song “Meet Me If You Dare” by ABBY LANE and its corresponding music video,

– a series of short videos showing different people that are affected by a rare disease and the prejudices they face.

 

Support the rare disease community by sharing the campaign and joining the discussion on social media:

Facebook, Instagram & TikTok !!

 

Feeling inspired? Why not create your own reel or TikTok about the prejudices you have experiences and sharing it with the #SchwätzMatMir ?

 

A huge THANK YOU to our partners EDS Lëtzebuerg, Wäertvollt Liewen, den-i, Trisomie 21 Lëtzebuerg, Een Häerz fir kriibskrank Kanner and Fondatioun Kriibskrank Kanner, to the ABBY LANE musicians, to respect.lu, to Lukas Grevis and Sophie Margue and, of course, to our ambassadors Abby, Hannah, Nathalie, Jessica, Denis, Nathaliia and Daniel who never miss an opportunity to contribute to raising awareness for rare diseases.

The song “Meet Me If You Dare”

The song “Meet me if you dare” is performed by ABBY LANE, a band that came together in the framework of a song contest launched by respect.lu, an organisation that fights violent radicalisation in Luxembourg.

 

The lead vocalist of ABBY LANE is a charming, funny 13-year-old girl and passionate singer, named Abby. She is a tough young lady, which she demonstrates daily. Abby lives with an ultrarare genetic disease, causing muscle dystonia and making common activities like speaking, grasping, or walking a constant challenge. The lyrics of the song are a pledge for respect, empathy, and open-mindedness. Abby speaks directly to the listeners, inviting them to put aside their preconceived beliefs and to “meet me if you dare”. The song is also a reminder that we all share the same needs, fears and hopes, regardless of our personal situation or condition. Thanks to the strong example that Abby sets, the song is also an inspiration for all those in doubt about their capacity to realise their dreams.

 

Abby’s mother Julie Darne-Scheidweiler does the background vocals and is “chef d’orchestre” for informal family performances involving Abby and her 2 younger sisters. Dan Theisen also does the background vocals and plays the acoustic rhythm guitar on the song. Arsène Salvestrin is an amateur sound engineer and plays the bass guitar. The rhythm section is aptly completed by percussionist and well-known actor, Al Ginter.

  • Song title: Meet me if you dare by ABBY LANE
  • Composer: Dan Theisen
  • Lyricists: Abby Scheidweiler, Julie Darne-Scheidweiler, Dan Theisen
  • Vocals: Abby Scheidweiler
  • Background vocals: Julie Darne-Scheidweiler, Dan Theisen
  • Acoustic guitar: Dan Theisen
  • Bass guitar: Arsène Salvestrin
  • Percussion: Al Ginter
  • Mixed  and mastered by Arsène Salvestrin
  • Recording sponsored by RESPECT.LU
  • Winner of the Respect Song Contest 2021
  • Music video: Lukas Grevis
  • Cover artwork: SOPHIE MARGUE & ALAN – Maladies Rares Luxembourg

The Instagram Reels and TikToks

click the photo to watch the video

click the photo to watch the video

click the photo to watch the video

click the photo to watch the video

click the photo to watch the video

video coming soon

Support the campaign

You can support the rare disease community by sharing the campaign and joining the discussion on social media: Facebook, Instagram & TikTok!! Simply click on the buttons below.

 

Feeling inspired? Why not create your own reel or TikTok about the prejudices you have experiences and sharing it with the #SchwätzMatMir ?

Support the campaign
Support the campaign
Support the campaign

The campaign partners

EDS Lëtzebuerg

EDS Lëtzebuerg is a non-profit organisation founded in 2021. It’s mission is to inform and enlighten the general public about Ehlers-Danlos syndrome, to contribute to the dissemination of information on screening and treatment methods for Ehlers-Danlos syndrome and to provide information, advice and support for people with Ehlers-Danlos syndrome and help for them and their families.

Wäertvollt Liewen

The aim of the non-profit association “Wäertvollt Liewen” is to help set up a national network of reference and competence for patients with Amyotrophic Lateral Sclerosis (ALS) or a similar pathology in the Grand Duchy of Luxembourg. “Wäertvollt Liewen”, founded in February 2012, serves as a link between people with ALS or a similar disease and the social and medical authorities in an ongoing effort to improve the living conditions of chronically critically ill people (with a chronic disease in the acute phase), in particular those regulating 24-hour intensive care at home by third parties.

den-i

den-i a.s.b.l.’s mission is to:

– inform about Marfan syndrome

– raise awareness among the general public

– support people affected by Marfan syndrome

Een Häerz fir kriibskrank Kanner

The non-profit organisation “Een Häerz fir kriibskrank Kanner” support families with children, adolescents and young adults with cancer.

 

Fondatioun Kriibskrank Kanner

The Fondatioun Kriibskrank Kanner provides daily support to children and adolescents with cancer as well as to their families.

 

 

Trisomie 21 Lëtzebuerg

The association Trisomie 21 Lëtzebuerg, founded in 2000, strives to help people with Down’s Syndrome to live as independent and fulfilled lives as possible. The focuses of the association are the issues of autonomy, professional future, residential structures, family support, public awareness and inclusion.

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