GASCDO Leadership
Mary Ampomah
President & CEO
Mary Akua Ampomah
Mary Akua Ampomah is a Clinical Psychologist/ Lecturer by profession at the School of Public Health, University of Health and Allied sciences, Ghana (UHAS). Prior to her new appointment with UHAS, she was serving the sickle cell community as a Clinical Psychologist at the largest adolescent and adult sickle cell clinic in Ghana- Ghana Institute of Clinical Genetics, KBTH.
She holds a Master of Philosophy Degree in Clinical Psychology at University of Ghana, Legon. She just completed her PhD program at the University of Ghana, Legon and awaiting graduation.
She is a strong advocate of people living with SCD globally. Her passion for advocacy in SCD stems from the loss of three close friends with SCD during her teenage years in Ghana. Her advocacy is strongly backed with evidence-based research in her role as Vice-President of the Korle-Bu chapter of the largest SCD patient organization in Ghana- Sickle Cell Association of Ghana (SCAG) and previously a Board Member and currently the president of Global Alliance of Sickle Cell Disease Organization (GASCDO). On the global level, she leads and serves the global sickle cell community to fulfill GASCDO’s vision and mission to eliminate any geographical inequality, stigmatization and treatment barriers.
Mary Akua Ampomah strongly believes that with culturally-sensitive and evidence-based education, and management and care, people living with SCD will live a better, longer and good quality of life irrespective of their geographical location.
Issa Ali
Chair
Issa Ali
Issa Ibn Abrahim Ali hails from the Caribbean, the Twin Island Republic of Trinidad and Tobago. He started his professional career as a licensed/registered pharmacist in the public health sector and later moved to being CEO (Pharmacy Manager) in the private sector. This International Master of Business Administration (Health Management) holder has been the President of the Society for Inherited and Severe Blood Disorders Trinidad and Tobago Ltd.) (SISBDTT) (Hemophilia; Thalassemia and Sickle Cell Disease) for the past eight years. Championing and advocating for persons living with inherited and severe blood disorders inclusive of Sickle Cell Disease, has become his life cause. In his capacity as President, he has represented SISBDTT at several International Conferences, namely hosted by internationally recognized organizations like the World Federation of Hemophilia (WFH) and the Thalassemia International Federation (TIF).
Some of the highlight landmark achievements of the SISBDTT under the leadership of Issa includes:
- 8 successful Annual Walkathons; the organization’s largest social; fundraiser and awareness event.
- SISBTT International Inherited Blood Disorders Symposium (2017) held in Trinidad and Tobago. “What was, What is, What will be”. Featured Speakers included Dr. Wayne Fredrick (President of Howard University, USA); Prof. Isaac Odame (Professor, Dept. of Pediatrics, University of Toronto, Canada); Prof. Kwaku Frempong (Professor Emeritus of Pediatrics, University of Pennsylvania School of Medicine, USA); Prof. Antonio Piga (Professor of Pediatrics, Torino University, Italy); Prof. Magareth Ozelo ( Assistant Professor, Dept. of Internal Medicine, University of Campinas, Brazil) and Prof. Suthat Fucharoen (Professor Emeritus, Institute of Molecular Biosciences, Mahidol University, Bangkok, Thailand).
- Execution of Universal Newborn Screening for Sickle Cell Disease at the Port of Spain General Hospital, T&T (2018). Historic Achievement, 1st time executed in the history of Trinidad.
- Initiation of the Southwest Regional Health Authority (SWRHA)/SISBDTT Haematology Outpatient Treatment Room for Inherited Blood Disorders inclusive of Sickle Cell Disease at the San Fernando General Hospital. (2020). 1st of its kind for patients of south Trinidad.
Issa has been inspired to serve the Inherited Blood Disorder Community by his mentor the late internationally renowned Consultant Haematologist Dr. Waveney Patricia Charles. Issa’s vision for the international sickle cell community is aligned with GASCDO’s vision and that is to ensure a reduction in the global incidence of Sickle Cell Disease (SCD) as well as to ensure that there is equitable access to optimal care and treatment by all persons living with SCD globally.
Adlette Inati
Vice Chair & Scientific Committee Co-Chair
Adlette Inati
Adlette Inati, MD, FAAP
Adlette Inati is Professor of Pediatrics at the School of Medicine, Lebanese American University, Byblos, Lebanon. She is also the Head of Pediatric Hematology Oncology Division and the Founder and Director of the Comprehensive Sickle Cell Disease (SCD) Program at Nini hospital, Tripoli, North Lebanon. She runs the largest Pediatric Hematology Oncology program in North Lebanon and heads a team providing comprehensive care to 1000 children with cancer and catastrophic blood diseases including 400 people with sickle cell disease of all ages. She is currently the Vice Chair and Co-Chair of the Scientific Committee of the Global Alliance of SCD Organizations (GASCDO).
Prof. Inati received her Medical Degree from the American University of Beirut, Lebanon and completed her Pediatric Residency and Pediatric Hematology–Oncology Fellowship at Johns Hopkins Hospital, Children’s Hospital Medical Center and Sidney Farber Cancer Institute, Harvard Medical School. She is American board-certified and member of Alpha Omega Alpha Honor Medical Society.
Prof. Inati has more than 80 publications in peer review international journals, hundreds of abstracts and sits on advisory boards and steering committees of multiple global SCD trials. She is a principal investigator in key clinical global and regional trials evaluating efficacy and safety of novel agents in SCD and thalassemia. She initiated the First Newborn Screening Campaign for Inherited Hemoglobin Disorders in Lebanon which identified for the first time the SCD carrier and disease rates in the country.
Prof. Inati has received multiple awards in recognition of her unwavering commitment to moving SCD and thalassemia forward and improving the quality of life of affected patients and their families. She is Founder and President of Georges Nassim Khoriaty (GNK) Foundation, a Lebanese NGO that promotes nationwide road safety and free health delivery and awareness
Prof. Inati ultimate passion remains mentoring young physicians and coaching them to become expert scientists and compassionate healers.
Biba Tinga
Membership Committee Co-Chair
Biba Tinga
As a parent of an adult living with sickle cell disease, she has a unique understanding of the needs of the children and families dealing with the disease.
She brings a wealth of experience and a lifelong dedication to improving conditions for those living with sickle cell disease.
For more than 10 years, she has leveraged her experience in advocating for new drugs, the risks associated with the lack of treatment options and efforts to implement strategies to better advocate on behalf of families.
She is a working mother and a tireless advocate for the Black community.
She proudly sits on the board of directors of GASCDO to put her lifelong experience at the service of the global community.
Cassandra Trimnell
Communication Committee
Cassandra Trimnell
Cassandra Trimnell is the founder and executive director of Sickle Cell 101 (SC101), a patient advocate and consultant.
In 2014, Trimnell received her Sickle Cell Educator certificate, issued by the Department of Public Health. Trimnell is responsible for developing and creating the educational material and curricula presented by Sickle Cell 101.
Sickle Cell 101 the largest global online platform dedicated solely to sickle cell disease and sickle cell trait research and education geared towards multiple key community stakeholders especially individuals living with sickle cell disease, their caregivers and healthcare providers. Educational material covers topics pertaining to sickle cell disease and sickle cell trait and is disseminated through a variety of platforms.
As a digital advocate, Trimnell is responsible for the strategic growth and engagement of Sickle Cell 101’s digital and primary platforms, which includes its social media, website (ranked 2nd most visited by patients), and newsletter. To date, Trimnell has grown its pages to over 45,000 followers on combined social media platforms with followers originating in 115 countries. With the highest engagement rates, Sickle Cell 101 promotes community and follower interactions for individuals affected by sickle cell and other community stakeholders.
Information presented by Sickle Cell 101 includes basic and in-depth information and statistics about sickle cell disease and trait; disease management; content addressing stigmas and misconceptions; research and patient engagement in research; patient experience and storytelling; sickle cell news, events, and medical advancements; and any additional relevant content. This content is also provided in Spanish through the Sickle Cell 101 Español social media pages.
Sickle Cell 101 provides a variety of programs that Trimnell has spearheaded to support the needs of the sickle cell community including educational and empowering social media campaigns; Ask Dr. Q, a sickle cell expert physician that provides resources and science-based responses to patient inquiries; The Sickle Cell Podcast, an auditory educational program for patients, advocates, researchers, and the general public to learn about sickle cell; and Sickle Smarts, literature provided by Sickle Cell 101 for patient advocacy groups to support their educational endeavors.
Sickle Cell 101 utilizes additional modes of education such as Continuing Education Unit training for healthcare professionals; national legislative advocacy; health fairs and sickle cell seminars, conferences and events.
Trimnell received a B.A. in Global Studies: Social, Political, and Economic Development from Sonoma State University in Rohnert Park, California. Trimnell’s passion for sickle cell education and advocacy stems directly from her living with sickle cell disease, hemoglobin SS.
Samuel Misiani Mbunya
Membership
Committee
Samuel Misiani Mbunya
Sam Mbunya is an advocate for change and inclusivity especially for Sickle Cell Disease and Hemophilia blood disorders. In his current role with the Indiana Hemophilia and Thrombosis Center (USA with his base in Sweden for Kenya Programs) which supports the AMPATH Kenya (Academic Model Providing Access to Healthcare) hematology program, he has planned and implemented advocacy strategies and campaigns as part of a broader commitment to increase awareness on blood disorders, influence public policy and expand patient organization and stakeholder reach. He is also a well-connected, passionate about access to healthcare initiatives and brings together stakeholders in Kenya, Africa and globally with resources in support of efforts to positively impact the policy environment. Various roles that he supports, either as a board or ordinary member in the blood disorders community, in Kenya and Africa are through the Sickle Cell Federation of Kenya, Kenya Haemophilia Association and the Africa Sickle Cell Alliance. Other assignments are with the Ministry of Health, Kenya where he leads Sickle Cell Disease advocacy pillars and advises in various committees and technical working groups. Sam Mbunya’s 10-year experience in biomedical sciences, science and engineering, program management, pathology – laboratory consulting and advocacy relations consulting services provides the Global Alliance of Sickle Cell Disease Organizations an edge towards achieving the organization’s mission.
Gavin Evans
Communication Committee
Gavin Evans
Gavin worked for fifteen years as the senior marketer at England’s NHS Blood and Transplant with responsibility for all matters relating to the recruitment, retention and management of a donor base approaching 2 million individuals. At NHSBT he was also involved in growing the UK’s organ donor register to 19 million registrants as well as recruiting bone marrow and tissue donors. During this time, he served on the board and as president of the Association of Donor Recruitment Professionals.
Since 2012 he has been Executive Director of Global Blood Fund, a US-based non-profit that mobilizes blood donors, collection organizations and industry suppliers within the blood-banking community to help support blood services in low-HDI countries. In this role he has led activities to support sickle cell disease patients in Nigeria and DRC and efforts to improve public understanding of the disorder.
Extending his interests in recruitment-related activities, Gavin has been an advisor to an organization promoting altruistic kidney donation and is also currently on the board of a UK-based fertility charity. He has an MBA from Henley Business School and writes and speaks regularly on donor-related issues.
René Esdaille
Communication Committee
René Esdaille
E-mail: reneesdaille@ymail.com
René is currently the Vice President of the Society for Inherited and Severe Blood Disorders Trinidad and Tobago Limited (SISBDTT) having served in this capacity since January, 2020. The SISBDTT is the oldest parent/patient support group in existence in Trinidad and Tobago which advocates for people affected not only with sickle cell disease but all inherited blood disorders such as Thalassemia, Hemophilia and Von Willebrand disease. René has previously served on the SISBDTT Board as Secretary from 2018 and Asst. Secretary from 2004 – 2017. As a member of the board for so many years she has been heavily involved in the following:
- Planning committee for the SISBDTT’s Annual Walkathon, the largest fundraising and awareness event
- Planning committee for a 3-day Medical Symposium for inherited blood disorders in March 2017 with renowned experts including Prof. Isaac Odame, Prof. Kwaku Ohene-Frempong and Prof. Suchat Fucharoen.
- Preparing designs for events and activities etc. such as t-shirts, medals, educational brochures, posters/flyers, newspaper ads, and social media communications
- Preparing correspondence to Ministers of Health, the Chief Medical Officer, Board members of Regional Health Authorities, corporate sponsors and other stakeholders
- Managing and updating membership records
- Managing the use of online tools to enhance the efficiency of communications
René has worked in the graphic design industry for approximately 15 years. She successfully pursued a Bachelor of Arts in Graphic Design, graduating from the College of Science, Technology & Applied Arts of Trinidad and Tobago (COSTAATT)’s Ken Gordon School of Journalism and Communication Studies in 2015 with Honours (Magna Cum Laude) and was the valedictorian.
As a sickle cell warrior herself, René understands the importance of the patient’s voice and knowledge about the condition in successfully advocating for the global SCD community. René is also currently pursuing an online Diploma in Advocacy from the Catholic University of Salta, Argentina which was facilitated through the SISBDTT’s relationship with Roche Pharmaceuticals.
Ade Sawyerr
Governance
Committee
Ade Sawyerr
Over the past 38 years, he has worked on projects that have given him an excellent insight into economic, social, educational, health and other welfare issues within the captive ethnic minorities communities and the need for advocacy organisations to minimise the inequalities they face in access and delivery of services.
Ade has served on the boards of voluntary organisations including grassroots support organisations and has been a trustee of some facilitating organisations. He has designed and delivered management development training to voluntary organisations and provided advice guidance and workshops on strategy when developing their business and delivery plans.
He has a good understanding of the duties of how boards operate the role to provide leadership, set strategic policy, undertake a supervisory role for the organisation and be the main accountable body that ensures that the work of charity organisations is carried out to meet the objectives and to protect the assets of the organisation.
As a sickle cell disease patient with lived experience, he acted as a peer support counsellor in the first sickle cell clinic that operated in Ghana in the 1970s, he also helped to set up the Sickle Cell Circle in Manchester in the early 1980s. He is part of the Patients Support Forum at Kings College Foundation Hospital, London where he attends the clinic, an active member of the Croydon Sickle Cell and Thalassemia Group in Croydon and part of the Haemoglobinopathy Coordinating Centre Patient Voice Group and a member of the Sickle Cell Society UK.
Ade’s background qualifications are in Business Management. After obtaining a BSc.Administration degree in Management in Ghana, he worked in different job roles in banking, systems analysis and management of small businesses. Before emigrating to the UK to complete a full-time MBA programme at Alliance Manchester Business School in 1982.
Ade Sawyerr is also a community activist, cultural enthusiast and a political and social commentator who writes an occasional blog that is a collection of thought-provoking, thought-leadership pieces sprinkled with some blue-sky thinking on pertinent issues affecting African communities both in the diaspora and at home. It includes articles on culture, politics, social and economic advancement, diversity and inclusion, community cohesion topics. It is also a repository of the political history of Ghana, traditions of the Gadagme people of Ghana, and the Pan-African politics of Kwame Nkrumah
Gautam Dongre
Governance
Committee
Gautam Dongre
Gautam Dongre is the founder member of National Alliance of Sickle Cell Organization. Gautam holds master’s degree in social science and has worked as sales executive in healthcare companies in past. Gautam is father of two children living with sickle cell disease. With two children with sickle cell disease he has to leave his full job and he decided to take social work and advocacy work as a full time engagement.
Gautam has been working as a volunteer for last one decade with Sickle Cell Society of India, one of the oldest organizations in the country and along with a group of advocates he took lead in forming India’s first alliance organization NASCO in year 2020.
Gautam represents NASCO at various national level taskforce and committees and has been leading advocacy efforts. Gautam along with executive members of NASCO has been instrumental in organizing some very impactful events with participation of diverse stakeholders. Gautam has been raising voice for mainstreaming SCD in ongoing health issues and ensuring rights of persons living with SCD is protected. He has been mentoring state level SCD organizations along with his core team to empower voice of Sickle cell disease across the country. Gautam has been actively engaging with medical experts at National and international level to bring issues of patients and caregivers and to strengthen the ecosystem of SCD care.
Gautam envisage a world where every person with sickle cell lives a quality life with dignity with equitable access to healthcare services. He is passionate to see a future where no new birth with Sickle cell takes place