The GASCDO Board of Directors is pleased to Announce Judy Grandison as its NEW President/CEO! On behalf of the board of directors of GASCDO, it is my greatest pleasure to announce the appointment of Ms. Judy Grandison as President/CEO effective immediately. She is the parent of a child living with Sickle Cell Disease (SCD) and the President of Camp Jumoke (CJ). CJ is Canada’s first medically supervised, overnight camp for children living with SCD established in 1994 in Ontario, Canada. To date, Camp Jumoke provided the opportunity for over 700 children living with SCD to attend summer camp. Through this outdoor experience, children living with SCD develop an appreciation for their own capabilities as well as learn vital social and outdoor skills. The camp also provides educational support by way of an annual scholarship towards post-secondary educational costs. Since the inception of this award, Camp Jumoke has presented 19 scholarships to some of tomorrow’s leaders. Judy’s decision to join the board of Camp Jumoke came shortly after her son was diagnosed with SCD in 2007 (a diagnosis that came through the fact that SCD was recently added to newborn screening tests performed in Ontario). She has been an active supporter of the SCD community for over 25 years. As a member of the Camp Jumoke family, she has held various leadership positions inclusive of Event Director, Vice-President, and now, current President. With over 25 years of management and leadership experience in both the public and private sectors, Judy has developed skills which have allowed her to manage conflicting priorities and work towards equitable outcomes with stakeholders of all levels. She has led and participated in countless community-based projects and events. She holds a Bachelor of Education in Adult Education and a diploma in Accounting and Business Administration and is currently studying Massage Therapy. Judy has welcomed her nomination with humility and a great sense of responsibility. To the Sickle Cell Community around the world, please join me in congratulating and warmly welcoming President/CEO Judy Grandison. M. ISSA ALI Chair GASCDO
Ontario, Canada— On June 19th, 2020 the Global Alliance of Sickle Cell Disease Organizations (GASCDO) will be witnessing the World Sickle Cell Day and continuing to provide a global voice and perspective for persons affected by Sickle Cell Disease / Trait. Sickle cell disease (SCD) is one of the most common inherited blood disorders in the world. GASCDO, its member organizations, collaborators and stakeholders understand that it is important that the needs of SCD patients and their families are put on the forefront of the global conversation. A key objective of GASCDO is to collaborate and catalyze impactful actions and initiatives to improve the standards of care for SCD patients particularly those living in low and medium-resource countries, as well as address the stigmas associated with the disease worldwide. GASCDO’s “Sickle Cell in My Language” campaign reflects the global diversity of this devastating disease, but more importantly, shares what it means to be strong living with SCD from individuals globally. Through advocacy of the Sickle Cell Disease International Organization (SCDIO), the support of the Republics of Congo and Senegal, the commitment of the scientific world, the African Union (in 2005), the UNESCO (2005), the WHO (2006), and the United Nations (2008), SCD was recently recognized as a public health priority. The 19th of June has been designated the ‘World Sickle Cell Day’, a day for us all to pause and reflect on the burden of this disease, to recognize the struggle and the resilience of those affected, and to raise awareness of the disease worldwide. With these important collaboration frameworks, these recognitions should lead to more concrete actions and are to be supported by strengthened partnerships at national, regional, and international levels. In healthy individuals, red blood cells are round and flexible and move freely through blood vessels to distribute oxygen to all parts of the body. Individuals with SCD have red blood cells which are “sickle” in shape, sticky, and nonflexible. These structurally modified red blood cells die prematurely leading to hemolytic anemia and block small blood vessels leading to vaso-occlusion, inflammation, hypercoagulability, and organ failure. Persons with SCD often experience severe...
As COVID-19 pandemic continues throughout the world, let's work to ensure the global sickle cell community is safe! To help GASCDO better understand and respond appropriately to the needs of the global SCD community around COVID-19, please complete our short survey and we thank you for your time. Who can complete the survey: Patients, caregivers, care providers, and the industry.
Announcing the passing of Carol Ossai, the interim Chair of the Board of Directors, Global Alliance of Sickle Cell Disease Organizations (GASCDO). It is with utmost sorrow and much sadness that we announce the passing of Carol Ossai, which occurred on Friday, April 10th, 2020. Carol’s passion to advocate for the improvement of care and treatment for people living with SCD started in 1996, after her son living with SCD suffered a stroke. This initiated the formation of the Sickle Cell and Young Stroke Survivors -a UK charity supporting children, young people and their families in the UK and Africa. From this period on, Carol dedicated her life to Sickle Cell Advocacy leaving behind her career in Food and Consumer studies. Carol also founded the Sickle Cell in Africa Patient Parent Network (SCAPPN)- a network of patients and parents directly affected by SCD that led grassroot initiatives in Africa. In 2019, Carol became a founding member and was later elected as the interim chair for GASCDO, a recently initiated global sickle cell disease (SCD) patient organization dedicated to inspiring hope and improving the quality of life of all people with SCD worldwide. An Eupati Alumna, Carol was an expert in patient/parent advocacy, public speaking and was an EUPATI Fellow with a keen interest in research and development of drugs for rare diseases. Carol was a selected reviewer with the European Medicines Agency and a selected member of the Innovative Medicines Initiative (IMI) pool of expert patients. GASCDO extends its condolences to the family members that Carol left behind and to the global SCD community. We believe that Carol would want us to continue working steadfastly in servicing the global sickle cell community as she whole heartedly did all through her life path. Carol’s positivity, compassion and resilience will remain a guiding legacy for all of us in GASCDO and for generations of SCD people to come. Released by: GASCDO on April 12th, 2020.