Awareness and Education Programs:
Develop countrywide multi-level messaging and multi- media education and awareness strategy to inform the public at large about the burden of SCD; reach those who have, or are at risk for having SCD, and educate them about treatment, care and management
We raise awareness on the impact of SCD on health, education, social and economic well being of individuals and their families.
Weholdeducational workshops, focus group discussions, interactional panel discussions, advocacy lectures, online webinars on various topical issues and special events.
We train young warriors of ages 6 to 12 years on self care and peer mentor-ship on proper management of SCD to enable them become their own advocates and also in understanding the National guidelines for Control and Management of SCD in Kenya.
Community Health Volunteers are trained to assist families, helping to manage their health care routines and access to care.
We Educate care givers and adult warriors on multi-disciplinary approach to management of SCD, that comprises nutritional, medical, mental and emotional wellness and moderate exercise.
Community sensitization and mobilization on the importance of having children screened and tested for the presence of sickle cell Genes or Trait, aimed at reinforcing early intervention in management and primary prevention measures.
We constantly source for information on the newest research findings on trial therapies and treatments and disseminate the information to the public.
Advocacy and Policy:
Our advocacy work coalesces around legislative initiatives aimed at including SCD in health budgetary allocations, and improvement of healthcare for SCD patients by providing special vaccines for the prevention of infections within public healthcare facilities.
We work with Parliamentary, Senate and County Assembly champions to raise awareness for SCD and to have legislation introduced to remove discriminatory and exclusion clauses in the National Hospital Insurance fund and private health insurance providers for complications arising as a result of SCD,
Promote public participation in events, rallies, walks and other advocacy activities to increase awareness.
Together with the county’s MOH department, we advocate for funding organizations to provide resources for SCD and sickle cell trait-related research aimed at finding affordable cure for the disease.
Partnerships:
We join with health care providers, researchers, organizations to serve the many children living with or impacted by SCD and their caregivers.
Our collaborative efforts with public and private health care providers, NGOs, support groups and other stakeholders have provided effective direction in positioning SCD as a recognized public health concern.
Partnerships with hospitals, blood bank and Kenya Red Cross to conduct regular blood donation drives and create awareness have continuously made blood available for sickle cell patients in need of transfusions in both private and public hospitals within Kisumu county.
Quality improvement initiatives:
The organization is in forefront of improving the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions.
We connect SCD warriors to health facilities for clinical care
We negotiate with pharmacies on reduction in cost of essential management medicines to support vulnerable families impacted by SCD.
Support Groups Formation:
Formed both virtual and physical support groups to provide a safe space where warriors and caregivers can freely air their success stories, problems, challenges and daily struggles without being judged or stigmatized.
The support groups make the warriors know that they are not alone and that helps in the elimination of feelings of self-pity and self-isolation. Through the SGs we have created a strong network of care givers, adult and teenage warriors, clinicians, hematologists and other experts that has resulted in continuous quality engagements on matters SC.
WorriorSpeaks! Program (Giving Sickle cell warriors and their families a voice to be their own advocates in telling their stories.) by encouraging children living with sickle cell of all ages and their families to share their creative talents, skills and innovative ideas with the world. Participants are particularly encouraged to create powerful and compelling works that express the pain, struggles, triumphs and hopes of living with sickle cell disease and trait. This program is open to children living with SCD or trait, as well as adults with SCD and their children. Siblings of Children living with SCD who are not ‘Sicklers’ or trait are also encouraged to participate, they too have stories to tell.
Project Timeless: Warriors encouraged to take action – Raise awareness, educate, inspire, establish support groups, start advocacy initiatives etc.
SC Teen talent program (discover, develop and expose talents) – Organize Annual teen talent festival/Show (Creative writing, drama, singing, art, sports, etc
Give back program – An Opportunity for SCD Warriors to bless others, bring help, hope and encouragement to others, and generously serve and share with others and the society
Young Leadership Initiative – Youth and young adults living with SCD or SCT are trained, inspired and mentored through a blended leadership training programs.
SCD Veterans : creative and talents Initiatives ( mainly targeting 24 years and above)
Establishment of SCD Consortium to coordinate public health research efforts:
- Develop a consortium to coordinate public health research efforts;
- establish a panel of experts in SCD management and treatment
- Facilitate periodic stakeholder meetings and symposia to share progress on the management updates,
- Identify research priorities and gaps to promote public health research initiatives to improve health outcomes for individuals with SCD.