Voting will close and the awardee announced on 24th February 2021 during the EURORDIS Black Pearl Awards Ceremony, starting at 17:00 CET.
For several years now she has performed as a soprano soloist at a number of concerts and recitals together with various orchestras and choirs, either with piano accompaniment or in chamber music productions. Her repertoire ranges from baroque and classical music to the romantic music of the 19th century as well as contemporary music of the twentieth and twenty-first centuries, including Lied as well as oratorios and opera.
Noémie is suffering from motor-neurone disease ALS (Amyotrophic lateral sclerosis), but she still continues singing. She sings concerts with orchestra, with piano, with choirs, while sitting in her wheelchair.
She is an inspirational and resilient figure to all: her efforts in organising charity concerts is admirable, and her song ‘Never Give Up’ encouraging to people living with a rare disease to keep on fighting. With her personal story and using her talent in voice, she has raised awareness for ALS and successfully contributed to funding research. For Noémie, ALS is not the end, and she will continue singing as long as it will be possible for her, because soon or later, ALS will take away her breath and her voice.
Uno Sguardo Raro
Go Make Memories
Carl Mason's and John Lee Taggart's outstanding short animated film ‘Go Make Memories’ has had a big impact in raising awareness of the genetic condition, Niemann-Pick disease by breaking the silence of the reality of patients living with this condition and showing the effect it can have on the entire family.
John Lee Taggart is the Communications & Campaigns Manager of Niemann-Pick UK (NPUK), and the International Niemann-Pick Disease Alliance (INPDA), two organisations dedicated to improving the lives of those affected by the rare genetic group of conditions, Niemann-Pick, both nationally and internationally respectively. John’s focus is primarily on increasing awareness of both charities, Niemann-Pick, and rare diseases more broadly, increasing visibility through various campaigns and projects, and creating an atmosphere both online and offline that fosters open dialogue for the close-knit community. Most recently, the NPUK: Social Not Distant campaign in 2020/2021, has provided content that has informed, supported, and entertained individuals and families alike, many of whom were vulnerable and therefore shielding during lockdown(s). In 2019 John developed the short awareness film, Go Make Memories. In his role as Executive Producer, John ensured the final product was always reflective of the small but passionate Niemann-Pick community – as it is their stories which led to the production of the film, and their experiences which therefore must always take centre stage.