General assembly 2012


Euro-HSP General Assembly, May 26 2012 from 6:15 pm to 10:30 pm

Place: Résidence International de Paris, 44 rue Louis Lumière, 75020 Paris.




Three guests were unanimously welcomed to sit in, Pasquale Masala, Secretary of IAVIPS (I), Anna Maria Cadeddu, Rep of Sardinia VIPS (I), and Geir Eriksen, President of NASPA (N). Bauke Sijtsma (Fred) of the Netherlands was going to drive in for the meeting but at the last minute he had to cancel. Hopefully we will meet soon.


  1. Annual report from the president (Dorthe)
  • Activity report 2011-2012
    The activity report was read and as it had been previously sent to all members, everyone quickly approved it. Attached.
  • Euro-HSP history
    The history had also been previously sent out and everyone approved it. Attached.

2.          Annual report from the treasurer (Ingerid)

  •  Report for 2011
    The 2011 treasurer's report was approved. Attached.
  • Budget for 2012 (including our GA in Paris)
    The 2012 budget had only just been sent out, so we took a few minutes to read it.
    It was approved after adding the membership fees of Netherlands (25 euros) and Italy (150 euros).
    It was also suggested and approved that 400 euros would be donated to HSP France to help offset the cost of the GA and the space provided.
    Updated Financial Statement attached.
  • Permanent bank account
    Although 3 signatures and the presence of the three are required to start a bank account in France, afterwards, regular internet banking can be used for payments and day to day work. Perhaps there will be a time in the future.
    Meanwhile, Marina will look into the NGO bank rules in Italy.
    Rob and Fina will investigate in Spain.
  1. Election of the Board of Directors


  • The treasurer
    Ingerid agreed to stand for one more year as long as someone is found for 2013. Unanimously approved.
    (all others were elected in 2011)


  1. Strategic  action plans for the future
    •  Conference and GA 2013
      Many suggestions were forthcoming - Paris and Italy among them. DK may be able to do it in 2014 when the new Centre is open. Or at Frambu in 2014 as NASPA will celebrate its 10th anniversary.
    • New members: enlargement of the Federation to all European countries
      We have leads on groups or patients in Ireland (Rob via a Dublin researcher), Greece (Marina and Rob via Marianna Lambrou), Switzerland (Jean with a French-speaking group and Marina with others, a German-speaking group), Iceland (Dorthe on her recent trip), and Portugal (Fina?).  Also Sweden, Finland and the Baltics (Dorthe). We kindly ask everyone to do their best in following up with each of these contacts by giving a monthly report to Dorthe. Both Rob and Dorthe can help as needed.
    • Possible involvement of the Euro-HSP Federation in the forthcoming European Grant Calls (Jean)
      We spoke about Dr Sobrido's submission for a grant, which names Euro-HSP as a partner. Sue suggested that we do some sort of internet survey on patients to se if there is interest in a European Registry. Jean will work on the survey with Rob via survey monkey. Some questions that we need to consider - what existing databases are there? How accessible are they? How to capture clinical symptoms, what types of consent are needed? Who should be the proprietor of the Registry(s)? Existing examples of patient registries? (Euronet, for one) There is an HSP meeting in October (presumably, Madrid) where we can discuss these things further. Everyone showed interest in attending Madrid. Both letters are attached, Euro-HSP's to Dr Sobrido and her reply to us.
      All agreed that genetic profiling must be done in order to better define the disease and eventual treatments. Quality of Life (QOL), fatigue and therapies need to be high up on the list, as well as exploring "alternative" therapies (acupuncture, etc).
      Jean also showed us some slides on important science that we need to keep our eyes out for. This will be edited and approval will be gotten from some of the sources of the data and we will make the slides available online.
      Jean underlined Research for Patients vs Research for Research sake.
      He spoke on a Scientific Committee of HSP + Friedrich's + Cerebellum.
      Marina mentioned a project that they are doing in Italy that we might be able to turn into a European project after the initial Italian (pilot) phase.
    • Annual fees. Suggestion: Change of Bylaws (attached)
      Proposal passed after much talk. When necessary or in the interest of not losing a member, membership fees can be reduced by the BOD. It was suggested that next year, a proposal will be submitted to amend this one.
    • Funding: Pharma companies, DIA Philanthropy Program, Eurordis Grant
      We need to more systematically look at Foundations and other resource areas. There will be a new call from the EC in July. For that, we need to lay out an action plan/strategic plan with 3 or 5 points that we would like to do in the next 2-5 years. Dorthe and Rob will work on this.
  1. Other business
    Dorthe - profiles - please send her your photo, description ASAP!
    Fina - page on our site for exchanging houses for vacations

We would like to thank all members of the French HSP association, especially Jean B for all his hard work leading up to and during the weekend, and congratulations on 20 years! And of course to the Euro-HSP members for working until 10.30pm!


Chair of the meeting: Rob