Heimasíða AHC samtakanna
„Human Timebombs“ has won the title for Best Global Impact Award for the 7th edition of Move Me Productions’ Festival.“
Congratulations Agusta Fanney, this is the 4th award the film receives. We could not be happier 🙂
www.humantimebombs.com
#humantimebombs #raredisease #rareconnect
A very good article from a Spanish website about AHC, here is a summary from the article:
„The triggers of attacks are diverse and unpredictable, they are often related to good times. Marta no longer wants to go to the carnival because the parade involves ending up paralysed.“
Ollie from Spain with her twin sister Charlotte
Ollie is a little girl with golden curls that her twin sister Charlotte calls Lele. When parents show Charlotte a video of Ollie eating a porridge her pupils begin to move, she smiles, shouts her name and goes to look for her in the crib where she sleeps.
Ollie is 21 months old and just diagnosed with AHC.
Ollie and the other 18 cases of Spain are loved. Now they just need a cure to leave the pain and the paralysis behind.
„when Charlotte sees something happening with Ollie, she takes care of her, it’s a great encouragement because Ollie imitates her, chases her around the house and they both mess up,“ said her mother Bridget Vranckx.
Ollie and the other 18 cases of Spain have love. Now they just need a cure with which to leave the pain and the paralysis behind.
„Rachel’s attacks come with happy moments. Opening the birthday presents, going to the carnival or seeing the boy she likes becomes a torture.“
Human Timebombs, a documentary filmed to spread awareness of the disease that can be seen in the website www.humantimebombs.com
One of the main characters tells us about a particular event where his daughter forgot the word „dad“ after a bad crisis. It erased the word so that she could not say dad again until a year later.
In the film not only are the fears visualised: You can also see that the hope persists when the film ends.
In 2012, researchers, working closely with family associations, were able to discover that the mutation that causes Alternating Hemiplegia is found in the ATP1A3 gene and with sufficient funding, finding an effective treatment seems possible.
„The key is to find out how the function of the gene can be restored or at least to stabilize the pump so that patients can lead a life as normal as possible,“ says Dr. Carme Fons Estupinà, a neurologist who has investigated the syndrome in the Sant Joan de Dèu since 2006.
„In Spain, Ollie’s parents, the recent case diagnosed two months ago, drink from that yearning. Aware that no pharmaceutical company is betting on this syndrome, they joined the Spanish Association of Alternating Hemiplegia Syndrome headed by Rafi Muñoz and Pilar Tejero, the mothers of Raquel and Marta, to raise funds.
For the full article click HERE
18th of January the website Human Timebombs was opened.
On the website you can watch the AHC documentary Human Timebombs in 10 languages.
Please visit HUMAN TIMEBOMBS website and if you are able we would very much appreciate a donation.
The Johannessons consider themselves an ordinary family. They live in an ordinary house on an ordinary street in Reykjavik, Iceland. But inside their home, they are living with what the father, Sigurdur, calls a human time bomb. He’s referring to his 10-year-old daughter, Sunna, who was diagnosed at 14 months with alternating hemiplegia of childhood (AHC), a neurologic disorder that causes episodes of spasms, paralysis, seizures, and excruciating pain.
The family’s journey is chronicled in Human Timebombs, a 40-minute film directed by Agusta Fanney and produced by Sigurdur H. Johannesson, Sunna’s father. The documentary was funded by several entities, including Svolurnar, a charity founded by flight attendants in Iceland. A five-minute version of the film won the Grand Prize and the Fan Favorite award at the American Academy of Neurology’s 2016 Neuro Film Festival.As the Johannessons cope with Sunna’s illness, researchers around the world collaborate to unlock the mysteries of AHC.
The first breakthrough came on January 18, 2012, when scientists at Duke University discovered that a mutation in the gene, ATP1A3, causes the disease. “When we found the gene, we were really excited because that gives a direction for treatment,” says David Goldstein, PhD, a Duke researcher interviewed in the film. Sigurdur hopes the film will raise awareness of AHC and inspire researchers and drug companies to work toward a cure and better treatment. He also hopes the film will find the many children with undiagnosed AHC. “Today, only 850 people are diagnosed, but we know there are thousands of people living with the disease without knowing it is AHC.”
American Academy on Neurology
http://journals.lww.com/neurologynow/Fulltext/2016/12040/Sunna_s_Story__A_powerful_documentary_charts_the.11.aspx
Viðtal þetta var tekið árið 2014 í tengslum við gerð heimildarmyndarinnar Human Timebombs.
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Laufey Ýr var taugalæknir Sunnu Valdísar og þar til hún fluttist til Florida og greindi hana árið 2007 þegar Sunna var 14 mánaða.
Sum börn greinast ekki fyrr en eftir mörg ár og eru tilfelli þar sem einstaklingar eru að greinast með AHC á fullorðinsárum.
AHC samtökin kynna með stolti nýjan markaðsstjóra, Ágústu Fanney Snorradóttir.
AHC samtökin og Ágústa Fanney hafa um árabil átt gott samstarf en Ágústa Fanney hefur leikstýrt stuttmyndum um AHC og nú síðast heimildarmyndinni Human Timebombs sem frumsýnd var í desember síðastliðnum.
Ágústa Fanney Kvikmyndagerðarkona útskrifaðist árið 2013 úr kvikmyndagerð og sjónvarpsframleiðslu í Collage of the Canyons í Kalíforníu.
Hún hefur unnið í hinum ýmsu verkefnum fyrir sjónvarp og kvikmyndir jafnt í Bandaríkjunum sem og á Íslandi. Ágústa Fanney starfaði einnig sem tökumaður hjá sjónvarpsstöðinni SCVTV í Los Angeles
Við bjóðum Ágústu Fanney velkomna til starfa og hlökkum til samstarfsins á komandi árum 🙂