About

Theuns and Drini Botha’s eldest son, Theuns junior, was diagnosed with Sclerosteosis in 2008, when he was 3 years old. They have since been actively involved in initiating research into a cure for Sclerosteosis. With rare conditions like Sclerosteosis, it is usually not financially viable for pharmaceutical companies to invest large sums of money to find a possible cure.

Immense effort has been made by Dr Herman Hamersma (ENT), Dr Louis Hofmeyr (ENT), Dr Jacques du Plessis (Neurosurgeon) and Dr Tommy Bingle (Neurosurgeon) to treat the patients symptomatically via surgery, but nothing has been done to find a possible preventative treatment or cure. Fortunately, Theuns obtained a BSc degree with honours in Biochemistry in 1998 at the University of Stellenbosch. Theuns and Dr Herman Hamersma (ENT) in Pretoria, have since 2009 petitioned tirelessly to find a cure for Sclerosteosis.

They sent the research proposal by Theuns (The effects of Sclerostin administering on bone turnover) to various reputable tertiary education institutions and pharmaceutical companies across the globe. For years Theuns tried to find a research facility to do the research for a cure for Sclerosteosis. Not an easy task for a businessman not involved in scientific activities for more than 10 years. Eventually, the person who finally showed interest in helping was Prof Vinny Naidoo, Deputy Dean in Research and Postgraduate studies at the faculty of Veterinary Science, at the University of Pretoria, here in South Africa. He agreed to accommodate the Sclerosteosis research project at one of their research facilities (at Onderstepoort), which started in January 2016. The only obstacle was finding adequate funding for the very expensive project.

Theuns and Drini founded the Rare Bone Disease Foundation in 2016 to raise funds. Family and friends greatly contributed to this fund, but it was the substantial initial donation made by Michiel Barnard that gave the project the necessary vital capital injection it so desperately needed.

The project however needed a main researcher who would be willing and able to be a part of the project on a full-time basis. By the grace of God, Mr. Timothy Dreyer agreed to be the full-time researcher of the Sclerosteosis research project. Timothy himself was diagnosed at the age of 2 with Sclerosteosis. He is now doing research to find a cure for his own condition. Timothy has undergone numerous corrective surgical procedures. Sadly, the condition has severely affected his hearing. Despite the effects of his condition Tim has achieved excellence in many spheres.

Timothy graduated from the University of Witwatersrand with a Masters degree in Medicine, including BSc Biological Sciences (Medical Cell Biology & Biochemistry), BSc Hons in Biochemistry and MSc in Medicine (Molecular Medicine). The latter was passed with distinction. UCB Pharma, a large pharmaceutical company, was notified about the project by a colleague of Dr Hamersma, Prof Socrates Papapoulos. They contacted Timothy and Prof Naidoo with regards to cooperating in the project and after all legalities were finalised, Timothy left for London on 3 September 2016 to make use of their world class facilities.

Following an article by Bloomberg Businessweek about pharmaceutical companies making use of abnormal genetics to develop treatment for various other conditions, but nothing being done for the rare disease sufferers themselves, BBC scheduled a documentary that was filmed at the end of 2016.

Everybody involved is hopeful that Timothy’s research will bring a cure for this condition of which he is a sufferer himself, even though he may not benefit much from a possible cure.