Background
2006-2012
The foundations of SCSI was laid in 2006 following ideas stemming from personal experience of Esther Onolememen’s access to sickle cell care in Ireland since 2001 when her daughter Reme first attended Children Health Ireland as one of the first few patients with sickle cell in Ireland. Her experience influenced are study in the field.
Esther’s Trinity College Master’s in Social Work (dissertation) research which findings built foundations of the society were influenced by:
Personal Reflection/experience
The Celtic Tiger Boom
Influx of Migrants, Refugees & Asylum Seekers
Rise in migrant birth in maternity hospitals
Challenges to Irish pediatric medicine (McMahon, C. & Smith, O. (2000)
& McMahon, C. Et al (2001).
Growing cases 400 (plus) known sickle cell cases for children.
No adult statistics.
Culture shock – The push factor & pull factor
Addressing the needs of families living with sickle Cell by Esther
Onolememen (Unpublished TCD MSW Research 2006-2008)
November 2012
First Sickle Cell Public Education & Awareness Conference held in November 2012 in Ireland attracting international guests speakers like Iyamide Thomas from the Sickle Cell Society UK. The conference was open to all parents, carers and families affected by Sickle Cell. The event was a milestone for Sickle Cell in Ireland. It allowed parents come out and tell their stories about Sickle Cell for the first time ever. On the panel for this historical event was Dr Corina McMahon - Consultant Hematologist, Our Lady’s Children’s Hospital, Crumlin
February 2013
The 2013 public education conference saw the launch of SCSI’s first sickle cell campaign tagged “Stamp Out Stigma & Pain”. This campaign was lunched following one of the major findings of Ms Onolememen’s research which identified stigma as a critical factor regarding access to service for families living with sickle cell in Ireland. The conference attracted high profile speakers from the UK and Ireland such as Prof. Simon Dyson, Professor of Applied Sociology, DMU, Leicester, UK, Dr Asaah, CEO Sickle Cell Society Ireland and WHO panelist, Dr Corina McMahon, Consultant and Head of Centre for Sickle Cell & Thalassemia, OLCH, Crumlin, and Diane Nurse, Head of Social Inclusion, HSE.
March 2013 - January 2014
SCSI held many training sessions & launched projects during this period. In March 2013, the Easter Project for sick children in the hospital was launched. SCSI provided 70+ sick children in the hospital with an Easter gift bag.
In June of 2013, SCSI held it’s 1st annual Wold Sickle Cell day celebration by educating people about Sickle Cell as a part of the communities outreach project. For the first time in Ireland, sickle cell awareness was brought to local schools in the Dublin area. The grand finale of this historic event was marked in Griffin Valley Educate Together School in Lucan.
From late 2013 to Early 2014, SCSI held leadership training sessions & stakeholder meetings. In early 2014, SCSI carried out a leadership project funded by Community Foundation Ireland tagged “parents as active agents of change”. The outcome report from this project was launched alongside SCSI’s Strategic Plan by Emer Costello, former Mayor of Dublin and Member of European Parliament.
In September 2014, SCSI was publically nominated to join the Patient’s First Campaign - a campaign led by Irish Patients Association, Irish Nursing & Midwives Organisation, Irish Medical Organisation, Patient Opinion, Cystic Fibrosis Ireland amongst others. The campaign addressed issues around patient safety and rights calling for the government to take action. A presentation was made to the Health Committee in Leinster house addressing these issues.
Colours of the Sickle LauncheD
The project titled: “Colours of Sickle Cell” was launched as awareness-raising initiative of SCSI
The project aims to aspire hope in the lives of people directly affected by sickle cell in Ireland and beyond through various lifestyle strategies, such as using music, fashion, drama and comedy to depict how people living with sickle cell can achieve their potentials and live beyond the limitations of having sickle cell anemia.
SCSI believe that together, we can aspire to break the cycle of pain and give hope to sickle cell warriors.
The same day of the launch, the 2nd Annual World Sickle Cell Day Celebrations were held.
SCSI SCI-FY Initiative Launched & First Annual Youth Charity Ball
The project titled: “The Sci-Fy Project ” is a project mobilised and led by our youths with its aim to: Mobilise and engage young people affected by sickle cell through empowerment and leadership training to active citizenship in outreach and developing their own peer support network and newer skills. Young people through this project will become empowered active agents of change ready to deliver information and awareness raising sessions on Sickle Cell through various skills and activities.
The first ever Youth Charity Ball was held the same day at the Clarion Hotel in Liffey Valley reaching over 300 people in attendance from all over Ireland & Europe. Hosted by the SCSI Team alongside the young people
Colours of the Sickle Annual World Sickle Cell Celebrations
The WSCD was declared by the United Nations in 2008 as a day set aside to globally raise awareness for sickle cell disease. Hugely celebrated on the 19th of June around the world since 2008; in Ireland however, 2015 will mark our 3rd official celebration so far.
As part of our agenda for this event, we will have a week of public education awareness campaign event commencing on the 16th of June and this is planned to end on the 19th with an awareness charity ball – Colours of Sickle Cell” featuring live band, comedy, drama and fashion show.
Launch of Sickle Cell Matters Campaign & 2nd Annual Youth Charity Ball
In the Glenroyal hotel, Maynooth, Co. Kildare, SCSI held the 2nd Youth Charity Ball reaching 400+ in attendance. Themed “Underneath The Mistle Toe” the charity ball has held in conjunction with CMRF (Crumlin Medical Research Foundation) and in aid of Our Lady’s Children Hospital Crumlin’s’ Sickle Cell Services.
