Sarah’s Voice is a 501c3 charity formed to express God’s love for persons challenged with the disabilities caused by a condition known as albinism. Currently the desire and focus is to support and encourage work being done in Sierra Leonel by local NGOs, that we can hold accountable, agree with our philosophy, and share a common vision.
PURPOSE STATEMENT
The specific purpose of this corporation is to provide support for and facilitate the work of helping persons with Albinism living in Sierra Leone to achieve their potential.
How you can help
To learn more about what we need please visit our needs page.
What is Albinism?
According to Standing Voice, Albinism is a rare, non-contagious, recessive genetic condition that limits the body’s ability to process melanin, reducing or eliminating pigmentation in the skin, eyes, and hair. Albinism occurs if both parents carry the recessive albinism gene, in which case the probability of having an affected baby is 1 in 4 (25%). This probability is the same in each pregnancy and bears no relation to other births. Globally 1 person in 18,000 has albinism. Oculocutaneous albinism type II (OCA2) is the most common type in Sub-Saharan Africa, where the condition has a higher prevalence.
It is already an established fact that many challenges unique to their situation, face persons living with Albinism in Africa. This is true on the individual level, and at the group (demographic) level.
We seek to empower persons with Albinism to enable them to live productively and also educate the nation about inclusion and respect for Albinism, and other people groups made vulnerable due to a disability in Sierra Leone and West Africa.
Our motivation is love informed by comprehensive empirical studies and high-quality data evaluation. We strive to build productive relationships with other organizations in the country and internationally that have the same goals and make a positive impact on all of our pursuits.
OUR VISION
Every person living with Albinism must have the opportunity to achieve and fulfill their dreams given by the Creator, and embrace and realize His plan for their lives.
Our Philosophy
Telling the good news of God’s love in word and action to all persons living with albinism and other disability groups in Sierra Leone is key to everything that we do. It is our guiding philosophy.
All of humanity is flawed in some way. Most of us are able to hide our deficiency and are thus more easily accepted by others. Persons living with Albinism cannot hide their disability and are thus among those often shunned and discriminated against. God loves everyone and makes no exceptions. He sees all our flaws, even the hidden ones.
Programs
Education of the Albino child, male and female, is one of our core programs.
We would be supporting organizations that visit schools in Sierra Leone to monitor and check on performance, well being and any issues of discrimination.
We will also support the distribution of school materials and scholarships for education.
Children and young people with albinism are doubly vulnerable: they are visually impaired and their striking difference in appearance, looking ‘white’ in a black population, makes them the target of bullying and name-calling. Support at every level of the education system, as well as by the Traditional Authorities, parents and the community, is required to facilitate their education. Head Teachers should be informed and trained about albinism and how to support those with albinism by working with the class teachers to encourage inclusion.
Skin and vision care
Within the limits of our 501c3 status, we will advocate for, and support those advocating for healthcare provisions for persons with albinism in Sierra Leone, that address the need for specialized skin cancer treatment and low vision evaluation.
Without the protective pigment melanin, people with albinism are highly vulnerable to skin cancer. Inadequate skin screening provision, lethally slow rates of diagnosis and an appalling lack of sun protection education, sunscreen, wide-brimmed hats, and protective clothing have given epidemic prevalence to this otherwise preventable disease.
Albinism causes a melanin deficiency that reduces pigmentation in the eye. People with albinism have a complex visual impairment, with altered retinal development and nerve connections to the eye. In albinism, the front and back of the eye develop differently, and nerve connections between the eye and brain are altered. Albinism does not cause total blindness, although many with the condition are classified as ‘legally blind’. Persons with albinism can usually distinguish colors, but their vision will typically lack precision or detail.
Skills/vocational training
To make persons living with albinism productive enough to take care of themselves and their families, and contribute to Sierra Leone’s development, those who have not been able to achieve completion of the standard high school or college, or do not wish to go to college, should be given access to alternative vocational skills training that will enable them to earn a living wage and contribute to the needs of others in their communities and to the nation. This will help to earn respect and facilitate inclusion.
Advocacy
We will give support within the limits of our 501c3 classification to Sierra Leone-based groups that advocate for justice, inclusions, funds, and any relief items to equally take care of all persons living with albinism living in Sierra Leone. We seek assistance from Government and Non-governmental agencies, civil society groups, and anyone who is able and willing to help make a positive change in the lives of those living with Albinism.