Agenda int.

Meeting of SP Group Leaders

1 - 2 June 2015

Farmaindustria, Calle Maria de Molina 54, 7° Madrid. Board Room

Madrid, Spain



To come together as the leaders of Spastic Paraplegia groups to leverage our separate efforts in the best interests of people with SP conditions everywhere.



  • to build relationships
  • to identify and deliberate on the most important issues of mutual interest
  • to begin developing ways to work together, and
  • to establish the basis for ongoing collaboration.


It is only SP support and advocacy groups whose primary mission is serving the interests of people with SP conditions.




Monday, 1 June 2015


Getting Started - Introductions


                      Meeting Purpose & Outcomes (Rob 10mins)


                      Meeting Introduction (Frank 10 mins)


                      Introduce yourself and your group to everyone (15 mins each):

  • briefly, who I am/we are, where I'm from and my role/involvement with my group
  • the purpose, mission and focus of the group - what we are about / what we do / priorities; our vision/preferred future
  • what I hope comes out of this meeting.


19:30                                  Evening meal together



Tuesday, 2 June 2015


Establishing effective treatments for the SPs - Dr Rebecca Schüle

Stage III clinical trials especially may well need to be multisite/multinational due to the numbers of suitably qualified patients required to produce definitive results. Compatibility of clinical/genetic databases from which to create the patient registries for clinical trials will require close working relationships well before the trials. This challenge is commonly found to be a critical limitation in the conduct of clinical trials, especially for rare diseases. Global alignment on SP databases may be challenging, but the likelihood of establishing effective treatments without it is low.


Commercialisation of an effective treatment in the future, so that it is affordable and globally available in a timely manner, will best be done with support groups presenting the strength of global alignment to pharmaceutical developers and distributors, medical professionals, government health departments and health service providers, politicians and so on.


  • Overview of clinical trials. the big picture
  • Patient registries. critical success factor
  • The Alliance proposal. what it is and what it can make possible
  • Widely available and affordable treatments. what it's going to take
  • Positioning for partnerships. becoming a good prospect for research and pharmaceutical interests
  • The role of support groups


Question & Answer with Dr Schüle as we go, followed by group deliberations.


13:00-13:30                        Lunch



Public Awareness: Potato Pants - Lori Renna Linton, Austria

As largely unknown rare conditions, name recognition/public awareness/political leverage of the SPs is low everywhere. An initiative in Austria in 2014, 'Potato Pants', may well represent an excellent unifying narrative for SP groups and people with SPs everywhere.


Presentation, Question & Answer and group deliberations.



Moving Forward Together - a dialogue

  • Setting priorities, making decisions and implementing plans
  • Collaboration. rethinking priorities and reallocating resources
  • Next Steps. how and where to move forward from this point.

On each of these points, we all need to share what we are thinking and where we stand.


Communiqué (and photos)

  • What messages do we want to send to ourselves as global support groups?
  • What messages do we want to send to our separate communities about what we have done here and where we are headed?


16:00                                                        Evaluation & Meeting Close