GA-SA, formerly the Southern African Inherited Disorders Association (SAIDA), was launched in 1973 by Professor Trefor Jenkins with the help of Professor Jennifer Kromberg. Initially prompted by a young couple who had lost their child to Tay Sachs disease and who needed support and education, it became clear that similar support systems were needed for other inherited disorders in South Africa. SAIDA was established and functioned as an umbrella group for 20+ patient support groups for different inherited disorders. The first SAIDA Chairperson was Professor Jack Metz, Mr G Brazil was the Honorary Treasurer, and Professor Trefor Jenkins was appointed as the secretary of the National Steering Committee.
The role of SAIDA included offering a support system to individuals and families affected with/by inherited disorders. The aim was to educate the lay public and medical staff on inherited disorders and to encourage research into these disorders, the causes, possible treatment and prevention strategies. Since its inception, there have been many support groups established for specific disorders, two of the first being for Down syndrome and for Cystic Fibrosis.
The members of SAIDA trained medical staff on how to deal with inherited disorders, and also trained parents from various support groups with basic counseling skills. Fundraising was a necessity to support the training courses and to fund regular newsletters and calendars.
Various fund raising efforts took place throughout the years and donations came in from a number of sources. The most notable of these donations was made in 1978 when Mr Philip von Wielligh, from Johannesburg Consolidated Investment, donated R15 000 to establish a trust fund. This fund was used to bring experts in genetics and other medical fields from around the world to run workshops and give lectures and seminars. The first of these guests was Professor Malcolm Ferguson-Smith, a Professor of Medical Genetics from Glasgow University in Scotland. These prestigious lectures were named the Philip von Wielligh lectures and one guest speaker per year was invited annually over a 20-year period, enriching the South African genetic community immeasurably.
In more recent years of its 40+ years lifespan, SAIDA has undergone a challenging financial season and was forced to cease functioning for a period of time. After a two-year period of inactivity, SAIDA was led through a process of re-evaluation, review and re-branding by Helen Malherbe, a Trisomy 18 focal point, and was re-launched under the new name, ‘Genetic Alliance South Africa’ (GA-SA) in August 2015. While continuing to focus on the three core aims of support, education and awareness and research as funding becomes available, GA-SA incorporated the new focus area of advocacy. Going forward, the aim of GA-SA is to unite the patient support community in the call to government for improved genetic services.
At the launch of GA-SA in August 2015 at the 16th SASHG Congress held in Centurion, founding members Prof Trefor Jenkins and Prof Jennifer Kromberg were honoured for their outstanding contribution to patient support spanning three decades at the SASHG congress.
The current Chair, Helen Malherbe presenting an award to Prof Trefor Jenkins, Founder of SAIDA.
Prof Jennifer Kromberg, SAIDA founder member receiving her award in August 2015.