Foto: Antiqua Print Gallery / Alamy Stock Photo

Because other­wise nobody would rese­arch this disease

Rare muscular diseases

Jacques Rognon is foun­der of the Schwei­ze­ri­sche Stif­tung für die Erfor­schung der Muskel­krank­hei­ten (Swiss Foun­da­tion for Rese­arch into Muscu­lar Dise­a­ses, FSRMM), and has contri­bu­ted a great deal to the successful estab­lish­ment of the foundation.

Myopa­thy. Moni­que and Jacques Rognon had never heard of this condi­tion. ‘In 1982, we found out that our sons, aged six and eight, were suffe­ring from this rare muscu­lar dise­ase,’ explains Jacques Rognon. The family was hit hard by the news, but they were not discou­ra­ged. On the contrary. They cont­ac­ted Profes­sor Bernard Fulpius in the Depart­ment of Bioche­mis­try at the Univer­sity of Geneva. He encou­ra­ged them to set up a foun­da­tion with the aim of support­ing rese­arch into muscu­lar diseases.

Network instead of assets

Rognon had no assets with which to support a foun­da­tion, but he had a degree in physics and, thanks to his profes­sio­nal back­ground, a strong network to fall back on. With the aim of posi­tio­ning the foun­da­tion on a natio­nal level and crea­ting a link between rese­arch and the speci­fic needs of suffe­rers, Rognon (supported by his wife and a few friends) set up the Schwei­ze­ri­sche Stif­tung für die Erfor­schung der Muskel­krank­hei­ten (FSRMM) in 1985, working in conjunc­tion with Asso­cia­tion Suisse Romande contre la Myopa­thie (ASRM, now ASRIMM) and Schwei­ze­ri­sche Gesell­schaft für Muskel­krank­hei­ten (SGMK). Both orga­ni­sa­ti­ons are commit­ted to support­ing suffe­rers’ unique needs. The new foun­da­tion wrote to the 300 largest compa­nies in Switz­er­land to raise capi­tal for its first funding round. ‘We recei­ved a posi­tive response only from compa­nies where there was a perso­nal link to the foun­da­tion,’ explains Rognon. ‘And that’s how we were able to support our first young rese­ar­chers.’ From 1988, the foun­da­tion was able to expand the basis of its funding, with the first tele­thon in French-spea­king Switz­er­land orga­nised by ASRIMM and FSRMM. Since then, nume­rous volun­teers, asso­cia­ti­ons and local fire briga­des have held various campaigns, always on the first weekend in Decem­ber, to support people suffe­ring from muscu­lar dise­ase. Half of the money coll­ec­ted goes to rese­arch and half goes to the support of sufferers.

Foto: Lucas Vuitel, zVg

«It’s not easy to find a trial group that’s big enough for clini­cal trials»
Jacques Rognon

Large number of rare diseases

To date, FSRMM has supported 181 rese­arch projects with funding amoun­ting to about CHF 28 million. The rese­arch projects are chosen carefully by the scien­ti­fic advi­sory board by means of peer reviews in a compre­hen­sive process. This private support is essen­tial. About 6,000–8,000 rare dise­a­ses are now known, with 500,000 suffe­rers in Switz­er­land. But the pharma indus­try is scar­cely inte­res­ted in rese­arch, since each dise­ase affects only a small number of suffe­rers. As a result, if the foun­da­tion did not exist, almost no one would offer support for rese­arch into rare muscu­lar dise­a­ses. The Fede­ral Office of Public Health (FOPH) has reco­g­nised this issue, laun­ching the Natio­nal Coor­di­na­tion for Rare Dise­a­ses (kosek) in 2014. ‘One of its acti­vi­ties is the crea­tion of a natio­nal regis­ter since it’s not easy to find a trial group that’s big enough for clini­cal trials,’ says Rognon. Howe­ver, finan­cing and imple­men­ta­tion of the measu­res have been delayed. ‘And the FOPH has had other things to do, given the pande­mic,’ says Rognon. He was presi­dent of FSRMM’s Board of Trus­tees for more than 30 years, during which time his youn­ger son died from leuk­aemia at the age of 13. His elder son is now the foundation’s secre­tary. In 2018, it was time for Rognon to give up his posi­tion as presi­dent, at the age of 80, but he remains asso­cia­ted with the foun­da­tion as hono­rary president. 

Alain Pfulg, a Bern-based lawyer, became the new presi­dent. He also knows about the dise­ase because it has affec­ted someone in his family, and says: ‘I’m aware of how important it is to rese­arch these dise­a­ses, so I was more than happy to take on this role.’

A million Swiss francs

FSRMM has become a major player in terms of muscu­lar dise­a­ses, support­ing six to seven rese­arch projects a year and giving out about CHF 1 million as part of this. ‘Every project is a stone in our mosaic that, in turn, lays the foun­da­ti­ons for another rese­arch project,’ says Pfulg. Howe­ver, as time has gone on, the first medi­ca­ti­ons have been deve­lo­ped in colla­bo­ra­tion with other inter­na­tio­nal insti­tu­ti­ons. FSRMM is a member of the Euro­pean Neuro-Muscu­lar Center (ENMC). It also orga­ni­ses a sympo­sium of Swiss muscle rese­ar­chers every other year and supports Netz­werk Myosu­isse. Raising funds remains a tricky task. Today, about half its income comes from dona­ti­ons from foun­da­ti­ons and private indi­vi­du­als, with the other half coming from the tele­thon. Howe­ver, due to the pande­mic this fund­rai­ser could not be held in its usual form last year. ‘And who knows what will be possi­ble this year,’ says Pfulg. Nevert­hel­ess, the short­fall in 2020 was cushio­ned by gene­rous dona­ti­ons from indi­vi­dual foundations.

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