Ómetanlegur stuðningur

Stuðningurinn sem AHC samtökin fengu í Reykjavíkurmaraþoninu var ómetanlegur og langt umfram okkar björtustu vonum.
Við vorum með 23 frábæra hlaupara sem hægt er að sjá hér:

http://hlaupastyrkur.is/godgerdafelog/nanar/4872/ahc-samtokin-a-islandi–ahc-association-of-iceland

Okkur langar að þakka hlaupurunum okkar og öllum sem hétu á þá innilega fyrir stuðninginn.

Hérna er nokkrar myndir frá hlaupinu:

10km hlauparar ásamt stuðningsliði, Fríða þjálfari (lengst til vinstri) átti að eiga þennan dag, Sara (fyrir miðju)keppti í Latabæjarhlaupi og Þórdís (næstlengst til hægri) hélt uppá 62 ára afmælið sitt þennan dag.

Í alla staði frábær dagur

þeir sem hlupu 10km

Gunnar, Bjarni og Sigurður

Ragnheiður, Viktor Snær, Sunna Valdís og Sigurður

Ævar og BarbaraÆvar og Barbara

Flottar stelpur

10km hlauparar

AHC foundation won at Chase community giving

Chase bank was giving donations to 200 charities. AHC foundation in the states was one of the 200. This is very good news for the foundation and all the AHC patients. Beside the fact that the money will come handy it also raises awareness of AHC and could lead to more funding hopefully.
http://apps.facebook.com/chasecommunitygiving/charities/383225425-alternating-hemiplegia-of-childhood-foundation-inc?src=charity-details-wall-post-self&ref=mf

AHCAI joining the Reykjavik marathon

The Reykjavik marathon will be held on the 21st of August 2010. You can sponsor a runner for a certain amount for each kilometer that he runs and the amount will then go to a charity of your choice. AHC association of Iceland is among the charities you can choose. More information on:
http://www.marathon.is/godgerdamal/godgerdafelog

Charity necklace

We have now started to sell the 50kr necklace. I took some with me to a conference in Punta Cana, Dominican Republic, and sold them all. Everyone loves them. They are ideal as a gift or just for yourself;)

More information on the Extended Network Meeting in Brussels

A Patient Network Meeting will be held on 21 November, Sunday to continue the integration and empowerment of patients affected by rare paediatric neurological diseases by having their input and involvement in nEUroped.
The second day, 22 November, Monday, dedicated to Best Practices for Developing and Maintaining Patient Registries in the European Union will be an open event to nEUroped partners, Patients Network members and outside participants.
The final day of the nEUroped Extended Network Meeting, 23 November, Tuesday will be to review the work accomplished in the nEUroped project and develop the future of the nEUroped Consortium: extend the Network to members outside the project and to patient networks.
Meeting details and registration information will follow in the next nEUroped newsletter and on www.neuroped.eu. For immediate questions please contact Tsveta Schyns (ts@enrah.net) and Francis P. Crawley (fpc@gcpalliance.org) for information about the Extended Network Meeting. If you are a patient or patient representative interested in attending, please contact Anna Kole (anna.kole@eurordis.org) for information on travel and subsistence reimbursement