4th ANNUAL Teddy Wears BLUE for AADCd Awareness Campaign: Celebrating 15 YEARS!!!
24th-3oth May 2021
This year The AADC Research Trust celebrates 15 YEARS of patient advocacy, raising global awareness and funding critical disease reasearch.
Being an ultra RARE disease has many challenges, one being the ability to have your voice heard amongst the many more well known causes. AADCd Awareness Week is our opportunity, as a group, to raise our profile to a global audience.
Our Awareness Week gives us the opportunity to raise essential funds in order to maintain the charity’s ability to support our amazing AADCd children & families.
All funds raised enable us to continue advocating for our ultra RARE disease.
They enable us to continue driving research, to continue pushing for better treatment strategies & to continue challenging the medical & scientific community to reach our ultimate goal of finding a CURE.
As part of our annual AADC Awareness Week Campaign 2021, The Trust hosted five AADCd Family Workshops.
Each workshop consisted of a leading AADCd expert, discussing key topics concerning this devastating disease. Global experts shared incredibly informative presentations, followed by Q&A sessions where families were able to put forward their questions.
Workshop 1; AAV2-hAADC Gene Therapy in Poland and USA
Professor Krystof Bankiewicz and Dr Toni Pearson
Workshop 2; PS128 Study; The Possible Benefits on Children with AADCd
Dr Wang-Tso Lee
Workshop 3; A Clinical Presentation of AADCd; Understanding the Symptoms and Treatments
Dr Roser Pons
Workshop 4; Understanding Phenotype Vs Genotype in AADCd
Dr Mita Bertoldi
Workshop 5; Understanding the Biochemistry in AADCd
Professor Simon Heales.
The workshops were a huge success! Attendance was high & families were given the rare opportunity to engage with our AADCd experts.
To view the workshop videos and transcripts please go to the AADCd Family Workshop homepage...
In loving memory of our brave AADCd Angels ...
En Pei 2021
Sydney Claire 2021
The AADC Trust began it's mission to advocate for sufferers of Aromatic Amino Acid Decarboxylase deficiency in 2006. To highlight our journey so far, we created this short video, in recognition of those who have been instrumental in our achievements ...