SNUPA: SHINING THEIR LIGHT ON AN INTERNATIONAL STAGE
By Abbie Venables, Events and Programmes Manager at Nerve
HOW SNUPA'S INTERNATIONAL ALBINISM AWARENESS DAY REACHED 20 MILLION
If you haven't already read about our partner organisation SNUPA, you should click here, because they are awesome.
They are so awesome that on International Albinism Awareness Day (IAAD) 2018, they gathered a record breaking 753 people with Albinism in Jinja, Uganda to celebrate diversity and inclusion.
Albinism in humans is a congenital disorder characterised by the complete or partial absence of pigment in the skin, hair and eyes. As a result, those living with Albinism are susceptibility to sunburn and skin cancers, resulting in high death rates. Furthermore, people with Albinism are subject to multiple forms of discrimination worldwide as the condition is still profoundly misunderstood socially and medically.
Their theme, “shining our light to the world” was used to raise awareness about the capabilities of persons with albinism, shattering myths about the condition and celebrating the organisation's achievements over the last year.
SNUPA'S ACHIEVEMENTS IN THE LAST 12 MONTHS
SNUPA's incredible advocacy work has not gone unnoticed in the last year, resulting in the organisation forming strong relationships with senior government officials, such as the Right Honourable Speaker of the Parliament Rebecca Alitwala Kadaga. As a result, the President of Uganda, Yoweri Museveni, has been informed of SNUPA's top priorities regarding healthcare, education and employment, and the Government agreed to remove import duty and taxes on sunscreen lotions. This resulted in a substantial increase in sunscreen donations, reducing the death rate for persons with albinism below the age of 40 from 98% to 70% in the Busoga sub-region.
SNUPA's engagement on an international level has grown significantly in the last year, as Chairperson Peter Ogik represented SNUPA at a consultation on the Regional Action Plan on Albinism and was also invited to Commonwealth meetings in London in April 2018. There he spoke with heads of government to address the stigma around disability and encouraged the implementation of the United Nations Convention on the Rights of Persons with Disabilities.
On a local level, the organisation has continued traveling to schools and communities to educate the Ugandan population about the condition; shattering myths and spreading their message of love and inclusion.
The SNUPA band has also grown in its momentum, reaching impressive views online after receiving an invitation to perform for Uganda's President at the International Disability Day commemorations in December 2017.
20 MILLION PEOPLE
In preparation for this year's event, the SNUPA team stepped up their pre-event activities, which included a very busy schedule of media work involving national and local TV and radio stations, as well as print outlets.
They have since estimated that the combined audiences of these media is over 20 million people. In this way, International Albinism Awareness Day gave SNUPA an opportunity to reach even those who could not physically attend the event in Jinja.
Attendance at this year’s event was higher than the record the organisation set last year. 753 persons with albinism attended, including people who travelled from far beyond Uganda. Thousands of persons without albinism also attended – a key part of their awareness raising strategy.
The celebrations lasted all day, and the team once again used their platform to continue shattering myths, as the organisation arranged for the Uganda blood bank to attend the event. This important symbolic act shattered false beliefs that persons with albinism do not have red blood like other people and gave the organisation an opportunity to show how much persons with albinism want to make a contribution to our communities alongside their brothers and sisters without albinism.
The events concluded with the launch of several new SNUPA initiatives and activities, including a cryogun for skin precancerous treatment, and a new web page dedicated to news on albinism issues through which SNUPA hopes to spread their messages even wider.