SPANISH ASSOCIATION OF ATAXIA PATIENTSFEDAES

In 1998, we generated the e-mailing list of Hispataxia and the webpage.

In 2000, we contacted researchers in Spain and abroad interested in ataxia research.

In 2001, the Spanish Association of ataxia patients FEDAES was established from the e-mailing list Hispataxia.

FEDAES is included in EUROATAXIA, FEDER and EURORDIS.

Goals: promote ataxia research and improve the life quality of patients with ataxia.

ACTIVITIES SUPPORTING RESEARCH (I)

Steps for fabricating and obtaining recombinant IGF1 and established a clinical assay with IGF1 (La Paz Hospital, Madrid).

Contribution with patients to clinical trials with idebenone.

Elaboration and publication of booklets disseminating clinical and scientific information to patients.

Provide information about public and private research calls to scientists.

Support to scientists working on ataxias in Spain and abroad in order to obtain funding from public and private agencies: Spanish Ministry of Health, Spanish Ministry of Science and Innovation, ICO Funds, La Caixa, European Commission (FP6: EUROSCA, and FP7), etc.

Support to scientists using innovative therapeutic approaches such as gene and cellular therapies.

Support to clinical researchers working on different aspects of ataxia: clinical trials, genetics, physiotherapy, psychology, etc.

ACTIVITIES SUPPORTING RESEARCH (II)

We strongly support research with embryonic and somatic stem cells in Spain.

We promote research with the following drugs:• Idebenone• Growth Hormone• Riboflavine• Deferriprone• EPO• IGF1• Phosphatil-B (multivitaminic and phospholipidis

complex)

ACTIVITIES SUPPORTING RESEARCH (III)

On several occasions, we have proposed candidates of Spanish researchers to different awards such as Lilly Foundation, Prince Felipe, Queen Sophia, March Foundation, Albert Sols, etc.

Contributions to several regulatory and technical documents such as the Modelo sociosanitario español, Ley de calidad, Cartera de servicios del SNS.

Active members of the Ethical Committee of the Institute for Rare Disorders.

ACTIVITIES SUPPORTING RESEARCH (IV)

ACTIVITIES SUPPORTING RESEARCH (V)

Active members of Board of Directors of FEDER contributing to the elaboration of Spanish and European regulatory and technical documents.

Participation in the elaboration of the Spanish National Plan of Rare Disorders. Coordination of the groups working on therapies for Rare Diseases.

Organisation of Meetings for Clinical and Basic Researchers:

• January 2001. Gregorio Marañón Hospital, Madrid.

• June 2004. La Paz Hospital, Madrid.

• May 2008. National School of Health, Madrid.

Organisation of Annual Workshops (Jornadas) with patients and scientists.

ACTIVITIES SUPPORTING RESEARCH (VI)

About FP7: First meeting in Hospital La Paz, Madrid. May 2006. The first call explicitly excludes funding of rare neurological

disorders. So in order to lobby ataxia research:• Meeting with Octavi Quintana DG of Health, EC.• Letters from Euroataxia members to members of European

Parliament and Technicians elaborating proposals for FP7.• Meetings where Spain elaborates proposals. Spain proposed to

include funding for neurological rare diseases in FP7.• Funding for neurological rare diseases is approved by the EC.• We will support, alone or in collaboration with other European

ataxia patient Associations, the ataxia network and ataxia research in FP7.

ACTIVITIES SUPPORTING RESEARCH (VII)

We have provided with funds support to:

• Obtaining recombinant IGF1

• Ataxia research in Gregorio Marañón Hospital, Madrid.

• Ataxia research in La Paz Hospital, Madrid.

• Ataxia research in CBM-CSIC, Madrid.

• Ataxia research on TAT-frataxin.

More calls to fund projects in a near future, depending on budget.

ACTIVITIES SUPPORTING RESEARCH (VIII)

Our work to disseminate ataxia

Through our webpage. Through our monthly newsletters. By e-mail and communications of all types. By participating in National and International

meetings and being active members of Associations.

By organising meetings on ataxias y promoting National and Europeans (FP7) research networks.

Visiting Research Centres and Hospitals. Promoting and Lobbying funding excellent research

on ataxia in Spain and Europe.

Organisation of the next EuroATAXIA General meeting in BARCELONA, SPAIN!

25-27 September 2009

You are all invited!!!!

Our work to disseminate ataxia

Many thanks to:

Miguel Angel Cibrián, President of FEDAES.

All friends forming the Spanish Ataxia Association FEDAES.

Dr. Antoni Matilla-Dueñas, for translating these slides and his collaboration and friendship during all these years.

To all of you for attending this lecture in Spanish, and for your dedication to ataxia research. Be welcome and thank you!