In 2020, the founding fathers and mothers of three OI societies sadly passed away. One of them was the first person worldwide to initiate a patient organization for OI. Many were following her example, and some years later, the idea of founding a European umbrella organization was born. Former OIFE president Ute Wallentin, has written an article about these three special personalities, their legacies and how this affected the establishment of OIFE.

Gemma Geisman, USA

Gemma Geisman died at the age of 85 on April 23rd 2020 in her American home. We had already reported on her and the OIF in our German OI magazine “Durchbruch”. Gemma had published her story in a women’s magazine in 1967 due to the initially completely unknown illness of her second son Mike, thus finding other families and from this eventually the great North American OI Foundation (OIF) was born, which celebrated its 50th anniversary last year, unfortunately only digitally.

Peter Radtke, Germany

Peter Radtke, who founded the German OI-organization Deutsche Gesellschaft für Osteogenesis Imperfecta (DOIG) in 1984, died in a Munich clinic on 28th of November 2020 at the age of 77 after a very eventful and committed life. He has been remembered and honored mainly by German, but also international media, over the last months and especially by many of the members of the DOIG.

Margaret Grant, UK

Only a few days after Peter Radtke, on the 3rd of December 2020, the founder of the Brittle Bone Society (BBS), Dr Margaret Grant MBE, also closed her eyes forever in Dundee after a prolonged illness. The BBS had then already existed for 51 years.

Margaret Grant was not only the first person worldwide to initiate and found a national patient organization for osteogenesis imperfecta. Following her example, other OI groups and then national OI organizations later emerged, such as our German OI Society in 1984.

We in Germany owe a lot to Margaret Grant and our founder Peter Radtke, who enjoyed the hospitality of the Grant family in Dundee and then several BBS conferences and initiated the foundation of the German organization in 1984. Both lived with OI themselves and had some hardships especially in the early days, but they changed the OI world!

The start of international collaboration

The first European scientific OI conferences took place in 1981 (Oxford, Roger Smith), 1984 (Oxford, Roger Smith) and 1987 and 1990 in Pavia, Italy. Of course with the support and participation of Margaret Grant and the BBS. (On the initiative of an American doctor in Chicago and in cooperation with Gemma Geisman, founder of the US OI Foundation (OIF), parallel conferences were held in Chicago/USA from 1970 onwards.)

The origin of OIFE

The idea of creating some kind of European umbrella organization for Osteogenesis Imperfecta was born in Salice Terme, Italy, in September 1990. It was first discussed between representatives from Italy, the Netherlands and a few other countries – all of whom were present as observers at the 4th International Scientific Conference on OI in nearby Pavia. Margaret Grant was a strong supporter of the idea and in October 1992 the Dutch OI society VOI organized a follow-up meeting with 21 representatives from 9 European OI associations (including Margaret and David Grant plus John King as observers from the USA) in Woudschoten, near Utrecht/NL – the driving force were Rob & Lidy van Welzenis from the Netherlands. Johanna Maskos from Germany was there as the first DOIG representative.

It was decided to found a European federation and a provisional board was installed. And only one year later the BBS invited European OI representatives to the BBS conference with Margaret Grant and Dr. Colin Paterson and Dr. Roger Smith and as observers to the 5th scientific OI conference in Oxford. The European OI Federation OIFE was founded in Northampton in 1993 with the support and hospitality of the BBS – we are forever grateful to our friend and benefactor Margaret Grant and the first OIFE President Rob van Welzenis.

Written (and translated) by Ute Wallentin, founding member of the German OI society, former German OIFE-delegate and former OIFE President.