Who Are We?
We are a registered Nonprofit, Non-Governmental Organization based in Malawi, registered with both the government and the Council for Non-Governmental Organization (CONGOMA) under license number R.G 20754/IM/5.2005 and C1603/2022 respectively. The top most decision making body is the Board of Directors which derives its powers from its founders, the board of trustees. Then we have an Executive Director (ED) who is based at headquarters in Blantyre. And we have a Spina bifida and Hydrocephalus Interdisciplinary (SHIP) coordinator/programme manager. Thereafter, there is a Finance and Administrative Assistant (FAA). And then we have focal persons who work on part time basis. These are government nurses and clinicians, physiotherapists and Rehabilitation Technicians who are designated to work 40% to 60% for us. They are distributed in all the four central hospitals. They do incontinence management and physiotherapy among other tasks. We also have lay counsellors who are parents to children with spina bifida and hydrocephalus, who do peer to peer counselling to parents who are admitted in the hospital.
Our Values
Efficiency
We utilize resources in a way that minimizes losses while achieving optimal results.
Local adaptability
We provide and advocate for care and treatment that takes into account the environment where the patient comes from in order to facilitate sustainability..
Individualism
We believe that though having the same condition each patient is different from the other, as such we provide and advocate for treatment and care that takes into account the uniqueness of each patient..
Holism
We provide and advocate for care and treatment that takes into account all the body systems of the person with spina bifida and or hydrocephalus while involving multidisciplinary health care professions.
Independence
The overall goal of our care, treatment and advocacy is to make the person adapt to activities of daily living with very minimal or without assistance from others
Teamwork
We believe that we can’t achieve meaning impact if we work alone. We therefore endeavor to work together with relevant stakeholders to produce the desirable impact to our target group.
Innovation
We believe that continuous learning and research brings new ideas and methods that can improve the care and treatment of our target group.
Accountability
We endeavor to provide information on our activities including finances to the people we serve and the public.
Confidentiality
We respect and protect private information of our target group.
Our Objectives
1. To make sure that rights and the special needs of persons with spina bifida & hydrocephalus are met, protected and respected;
2. To help persons with spina bifida & hydrocephalus to have access to quality treatment, care and support in Malawi;
3. To put in place and or support primary prevention initiatives or activities for spina bifida & hydrocephalus as much as possible;
4. To put in place and support initiatives/activities for prevention of secondary disabilities through early detection, timely treatment and preventive measures;
5. To raise awareness, information, research and education of spina bifida & hydrocephalus to clinicians, traditional healers, parents, teenagers, children and general public in Malawi and Africa.
6. To advocate for improved timely and affordable access to care and treatment and influence health policies for spina bifida & hydrocephalus;
7. To Promote healthy research, training and referrals of persons with spina bifida & hydrocephalus;
8. To provide a platform for government, non-governmental, national and international organization groups, person(s) and professionals to engage in and help in assisting persons with spina bifida & hydrocephalus;
9. Collaborate with government and relevant public and private institutions in assisting to overcome problems and challenges facing persons with spina bifida & hydrocephalus;
11. To promote access to preventative and curative medical care, life long, multidisciplinary care for persons with spina bifida & hydrocephalus;
12. To ensure that persons with spina bifida & hydrocephalus can participate in social life having equal rights and being self-determined;
13. To develop and or facilitate development of Strategies and protocols that promote quality, effective and cost effective treatment and practices towards persons with spina bifida and hydrocephalus that are culturally acceptable;
14. To ensure that persons with spina bifida & hydrocephalus are represented by support groups or associations that are strong and independent in voicing their concerns;
15. To promote involvement/inclusiveness of persons with spina bifida & hydrocephalus as much as possible at national and international level;
16. To safe guard, promote, strengthen and voice out against human rights abuses for persons with spina bifida and hydrocephalus without fear or favor in a manner that is consistent with national laws.
17. To support Malawian initiatives that is of benefit for the target group.
18. To provide accommodation and where needed and possible to gain property to serve initiatives for the target group.
19. To engage in fundraising initiatives whose purpose is to acquire funds to contribute towards improvement of care for spina bifida and hydrocephalus persons in Malawi.
20. To promote, provide and facilitate provision of education and training to health workers that are committed to improving care of persons with spina bifida in Malawi and to put in place measures of retention of those trained.
