Our projects

Albinism Umbrella has four major themes that guide our work.

  1. Research-provision of accurate data on all issues of albinism
  2. Prevention- Skin protection through affordable and available sunscreens
  3. Protection- legislation to protect PWA, policing measures
  4. Equity and non-discrimination. Awareness and sanitation.

Albinism Umbrella strives to contribute to the attainment of SDG 4 & 5 among others in all its efforts.

SDG 3: Ensure healthy lives and promote well-being for all at all ages

SDG 4: Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all

RESEARCH

Through its operations Albinism Umbrella(AU) strives to collect data from all relevant sources. AU seeks to have a national bassline survey undertaken to inform various interventions.  It is estimated that there are over 20,000; living with some form of albinism.

We collect all media reports, print digital and otherwise in our archives. Examples below for Quarter 1 2018.

  • Diana Nabirye struggling with poor eye sight and dropped out school. It is not true that albinism has any medical link to dental health. Daily Monitor 22nd February 2018.
  • Pan African Parliament, Isaac Mwaura delivers a report where records for Uganda are inaccurate. This calls for accurate data on albinism in Uganda. New Vision Monday 12th March ,2018
  • Nalubinga, a Mass Communication student at Islamic University in Uganda defender the rights of PWA. Daily Monitor 21st March 2018
  • A medical doctor graduated in the recent Makerere University while a pupil excels at PLE from Nakaseke district.
  • Akello fights for three children with albinism, the scarcity of sunscreen made her trek from Oyam to Gulu to get this rare jewel. sunrise.ug/news/201803/albinos-woes-government-action.
  • Namono Dorothy dropped out school and became a mother at the age of 16 years. Her son Jeremiah has albinism and Frank the father has denied responsibility and is in hiding. Saturday Vision 31st March 2018.

PREVENTION

Albinism Umbrella seeks to prevent skin cancer which accounts for 80% death among PWA. Skin cancer is preventable and through the use of affordable and available sunscreen this can be achieved.

We are in partnership with Pincer Research and Trailing Institute to develop and formulate an organic natural oils based (Sun shield shear butter) sunscreen majorly for the African skin.

The prototype is out and the pre-testing has provided incredible results. It is yet to be certified by the relevant authorities.

EQUITY AND NON DISCRIMINATION

In this section, AU endeavors to create awareness in order to eradicate ignorance about the albinism condition. The high level of ignorance is one of the root causes of discrimination.

The starting point is the two basic rights. Right to health and right to quality education aas per the SDGs.

AU through partnership with relevant stakeholders has embarked on training health care wires and midwives as well teachers.

We have so far trained 52 village health teams in Luweero district in collaboration with Care for Uganda, a UK based charity in Bbowa.

Training of health-care workers and midwives in January 2018.

Albinism Umbrella has also visited some primary schools especially where PWA have enrolled. We have visited three schools in Q1 2018. The need is huge and parents play a pivotal role in the success of their children attaining a quality education.

 

 

 

BennyHinn and Macklean seated at the front of the class wearing their hats.

St Mary’s Nursery and day care center in Nakifuma , Mukono district.

 

 

 

 

Family visits

AU often visits PWA in their homes. This has proved to be a very welcomed move where meaningful discussions are held with local leaders and other opinion leaders about albinism in the area.

“” No one has ever visited me. I feel so happy that you have come this far only for me”” Lillian says almost sobbing. Such visits provide assurance to the family that they are not alone in this struggle. We often hear neighbors appreciate our efforts to look for our won. It creates a big sense of belonging among the albinism community.

 

Lillian and her grandmother in Sembabule district.

While in Luweero district, we visited Elizabeth Mirembe a strong advocate for the enjoyment of our rights and protection having escaped ritual sacrifice herself. She was so excited for us to have a meal in her home.