The Centre for Health Ecologies and Technology (CHET) at the International Institute of Art, Culture and Democracy (IIACD), Bangalore organized the Blue Ribbon Art Exhibition and Film festival 2016 under its Autism and Rare Diseases Awareness (ARDA) outreach programme. This event was held on March 1, 2016 to commemorate Global Rare Diseases Day. The aim of this unique festival was to generate awareness of rare diseases. This was the first art exhibition and film festival in India focusing on rare diseases and we aim to make it an annual event.
The curators, designers and other organizers of the Blue Ribbon Art Exhibition and Film Festival 2016 at CHET were inspired by the Global Genes Project’s Blue Denim Ribbon which is universally worn on Global Rare Diseases Day, celebrated on the last day of February every year. The Blue Denim Ribbon is a symbol of hope for people fighting rare diseases and to help raise awareness.
Contemporary artist Ranjana Ramchander who curated the art exhibition is a Trustee of IIACD and cofounder of the Haemophilia Society - Bangalore Chapter. Moving beyond creating awareness, the exhibition provided a space for creative expression and generated hope for the children and young adults with rare diseases and their families. It showcased the artworks of children and young adults with Thalassemia, Haemophilia, Duchenne Muscular Dystrophy (DMD), Autism and other developmental disorders.
Artworks for the exhibition were collected by the ARDA team from the following rare disease patient advocacy associations in Bangalore: Haemophilia Society - Bangalore Chapter, Dystrophy Annihilation Research Trust (DART), Rotary-TTK Blood Bank and Thalassemia Society of Karnataka. The curator also included paintings by Neelesh Ganesh, a talented young artist from Gurgaon with Asperger’s syndrome supported by ALFAA and artworks by children with Autism and other special needs from Sajjan Rao Vidya Samsthe, Bangalore.
Eminent Artist Balan Nambiar who reviewed and prepared an insightful and sensitive comment on the exhibited artworks stated:
“With some exceptions, almost all works are done by those who are in the age between six and sixteen or by those who are older but their mindset is still younger. Most of them used brilliant colours and bold lines, which reveals their passion in delineating their feeling, either by intuition or by intention. “
The Blue Ribbon Film Festival curated by Dr Namitha A Kumar (Research Director, IIACD) included award winning films such as “The Indomitable Spirit” by Maya Chandra and “Extraordinary Measures” by Tom Vaughan and provided an introduction to a few rare diseases such as Haemophilia, Thalassemia, DMD and Pompe disease. The films captured not just the pain, trials and tribulations, but also the joys, victories and future hopes of people with rare diseases and their families. The larger goal of the Blue Ribbon Art Exhibition and Film Festival on rare diseases was to communicate the diversity and beauty in the lives of people with rare diseases.
Chief Guest Dr. Kiran Mazumdar-Shaw (CMD of Biocon) inaugurated the Blue Ribbon Art Exhibition and Film Festival. Prof. Vijay Chandru, (Hon. Director, CHET) delivered the inaugural address. Dr. Usha Kini (Professor of Pathology, St John’s National Academy of Health Sciences) who has been researching Hirschsprung disease delivered the keynote.
The first Rare Disease Policy Draft framework for Karnataka prepared by CHET and collaborators was handed over by the Chief Guest Dr Kiran Mazumdar to Smt. Sowjanya, Director of National Health Mission in Karnataka at this event.