Sean is 9 years old, son of Olga and Bill Gerber. His story can be found HERE
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 Lisa Marie Hodes Daughter to Renee and Paul Hodes, sister to David and Marissa whom she all adores. She is a happy, funny little girl who loves arts and crafts, music, and using the phone and computer…… Read about Lisa HERE Please donate to the AHC foundation and help us fund research on Alternating Hemiplegia.  Kathleen Egan A well told story about Kathleen´s struggles and accomplishments . Click HERE for the story. Verið er að þróa lyf við RETT sjúkdómnum sem gætu verið komin á markað eftir ca 5 ár ef allt gengur vel. Viðtal við foreldra stúlku með RETT er hægt að sjá HÉRNA Yesterday there was a 2 hour video-conference that included AHC representatives from US, Italy, Holland, Belgium, Iceland and Canada. The meeting was very informative and worked quite well.  THE VACCINES The British rock band The Vaccines made a generous donation to the AHC association of Iceland recently. Alternating Hemiplegia of Childhood is an orphan disease.  ÁRNI HJÖRVAR Orphan disease is a disease which has not been “adopted” by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.  Sunna Valdis, the only AHC patient in Iceland On 29th of February a campaign was lunched to find 1 million persons to give 1 US dollar (or more) in support of the AHC foundation. For more information and to donate to the foundation click HERE  The Vaccines
 The Vaccines  Árni Hjörvar Breska hljómsveitin The Vaccines styrkti AHC samtökin á Íslandi nýlega. AHC er sjaldgæfur taugasjúkdómur sem einkennist af endurteknum, tímabundnum helftarlömunarköstum, sem yfirleitt ná til annarar líkamshliðarinnar í einu, en sjaldnar til beggja líkamshliða samtímis. Köstin hafa einnig áhrif á minni en algengt er að eftir köstin gleymi barnið því sem það hafa áður lært og hefur það mikil áhrif á þroska þess. þann 29. febrúar var hafið söfnun fyrir AHC börn til að fjármagna rannsóknir sem nú þegar eru byrjaðar og lofa góðu. Til að sjá meira um söfnunina og styrkja ýtið HÉRNA  Sunna Valdís, eini AHC sjúklingurinn á Íslandi AHC Kids – One in a Million campaign started today. The idea is to get 1 million people to donate 1 usd and help fund important research for AHC kids all around the world. Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the national level Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! Get involved! The focus of this year’s event is Solidarity. For more information click HERE |
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