A non-governmental organisation, Sickle Cell Hope Alive Foundation (SCHAF) founded in 2012 to support the community in reducing the burden of Sickle Cell Disease (SCD), is currently blazing the trail with landmark achievements across the world. SCHAF was founded by a Professor of Haematology, and former Director of the Institute for Advanced Medical Research & Training, University of Ibadan, Nigeria, Professor Adeyinka Gladys Falusi.
Taking the Keynote Address at one of the many outreaches and workshops held by the organisation as part of the activities on creating awareness on SCD, Vice Chancellor of Chrisland University, Ogun State, Professor Peace Babalola, commended SCHAF on their laudable contributions to humanity, describing the organisation as registered with a multiprofessional team of experts.
To intervene in the SCD problem, Babalola disclosed that SCHAF has established 4 strategic pillars which are, drive awareness & education, provide care, conduct research, develop a partner network. The overview of the NGO covers Awareness which is to educate the general population about SCD as a preventative measure; Care, focused on supporting, empowering, and improving the quality of care provided to SCD patients; Research, based on collaborating with global institutions on SCD research to improve patient outcomes; Partnership, focused on building an engaged network of partners/ambassadors/volunteers/donors to bring our vision to life.
Envisioned to reduce the burden of Sickle Cell Disease in Nigeria through awareness, care and research, SCHAF has so far conducted in-person community outreaches in Schools, Religious organisations, Market places etc. and has reached 11,000 youths.
On awareness and education, the Chrisland VC revealed that “over 1,500 free Genotype tests have carried out in youths; a new POCT approved by WHO is now in use by SCHAF with a ton of advantages over the commonly available method of electrophoresis; establishment of unique KYG Clubs in 12 Schools so far to be extended to religious organizations; SCHAF eventually will network to train NYSC as a train vehicle of change for the KYG program in the 774 LGA’s in Nigeria; awareness on Radio, TV, Jingles, Flyers, Brochures & Posters, Seminars & Lectures especially on WSCD June 19th and SCD Month of September since 2012 to date.
On care, over 34 Leg Ulcers treated with a new expensive Compression Therapy in 2016 and 50% healed; Routine Drug Provision to about 300 SCD individuals quarterly (Folic Acid, B.Co, reludrine, plus Vit. C & Zinc during COVID-19); provision of Parent Handbooks I & II ages 0-6, >6 years for home care & Management care at home when there is no doctor; also distributed more 2,000 copies. In the areas of research, SCHAF granted 8 Projects so far totalling over $500,000 by multi-national and multi-disciplinary teams, alongside many Publications from SCD projects.
With the many landmark achievements of the NGO, it seeks concerted efforts of the entire community—patients, families, healthcare providers, and policymakers, considering that improved healthcare facilities and services are crucial, as is the need for extensive education and awareness campaigns to dispel myths and inform the public about sickle cell disease; hence, the need to continue to foster these networks, ensuring that every individual with sickle cell disease feels supported and understood.
Relating the Nigerian case on SCD, Prof Babalola explained that the reality is much more worrisome due to cost and availability of emerging treatment, but the future holds tremendous promise for those affected by sickle cell disease. She added that, “with continued research and innovation, there is a realistic possibility that SCD will become a manageable chronic condition, or even be eradicated altogether. Together, through sustained effort and collaboration, we can envision a world where sickle cell disease no longer imposes life-limiting challenges on those who live with it.”
Apparently, the Sickle Cell Hope Alive Foundation Nigeria, under the visionary leadership of Prof. Adeyinka Falusi, has been at the forefront of the SCD battle with commendable dedication to improving the lives of sickle cell patients through education, research. The foundation's programs and initiatives have made a tangible difference, offering hope and support to countless individuals.
Working with global institutions to provide cutting-edge research and SCD training to improve patient outcomes; SCHAF is blessed with a multidisciplinary team of medical and community-oriented professionals, all working together to empower patients and their families to live better, healthier lives.
With efforts made possible through the generosity of caring individuals, corporations, and foundations both locally and abroad, SCHAF looks forward to improving strategy and programs on, “increase targeted Genetic virtual education series, start counselling to Patients and Caregivers, start blog posts monthly, start newsletter to members monthly, start active Media Press promotion, Improve branding by elevating SCHAF brand to a recognised world class authority on SCD.” Therefore, with acute financial support, the organisation will do better and go wider in saving lives.
