Crew
Ágústa Fanney is the author and director of Human Timebombs. She is also the cinematographer for the film as well as the sound designer. Ágústa Fanney has great a passion for creating films for a good cause and she has previously worked on several projects in the US and in Iceland.
Ágústa Fanney made two short films about AHC before making Human Timebombs. In 2015 she co-founded the AHC International Media (AHCIM) along with Sigurdur Holmar Johannesson where they will continue to produce interviews and online material related to ATP1A3 diseases in order to keep the information flowing and push research for AHC. Ágústa Fanney currently lives in Iceland, she is a permanent resident of the United States and plans to move back to California.
Sigurdur is the president of AHC Federation of Europe as well as president of AHC Association of Iceland. Sigurdur is an Air Traffic Controller by profession. He volunteers in various committees and working groups on behalf of the AHC community.
Sigurdur is a co-founder of AHC International Media (AHCIM) along with AgustaFanneywhere they will continue to produce interviews and online material related to ATP1A3 diseases in order to keep the information flowing and push research for AHC.
Sigurdur also stars in the film, he is Sunna Valdís´s father.
Ólafur Darri is a well known actor in Iceland and has also made a name for himself in Hollywood. He has worked with the AHC Association of Iceland for years and is the association’s protector.
About Us
The reason is the high cost of drug reserach and development. Pharmaceutical companies are not interested in producing a drug for a few thousand people because they do not see a profit.
The AHC parent organizations are struggling to raise funds and it really is a race against time.
During the making of this film we lost 6 children because of the disease.
In the film, we take a sneak peek into the life of Sunna Valdis, who is a wonderful little girl that lives with her family in Iceland.
The documentary gives an excellent insight into the difficulties that they have to endure on a daily basis.
We learn about the disease and the situation is explained by doctors, researchers and families on both sides of the Atlantic. We learn why AHC is such an important disorder to discover and manage not only for AHC patients and their families but also for millions of people all over the world.
The question why rare disorders are not being treated as well as they should be and why more researchers should be interested in AHC is indisputably answered.
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AHC organisations
- AHC assciation of Italy
- AHC Association of Canada
- AHC association of Denmark
- AHC association of France
- AHC association of Germany
- AHC association of the Nederlands
- AHC FEDERATION OF EUROPE
- AHC Foundation
- AHC INTERNATIONAL ALLIANCE
- AHC Ireland
- AHC support group of United Kingdom
- Alternating Hemiplegia of Childhood Foundation
- CURE AHC
- Cure AHC UK
- The Spanish AHC association
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Cast
Cast
In order of appearance
Mr. Sigurdur Holmar Johannesson
Air Traffic Controller/Producer/Manager
Father of Sunna Valdis
Reykjavik, Iceland
Sigurdur Holmar is President of AHC Association of Iceland and
President of AHC Federation of Europe.
https://www.facebook.com/siggi.johannesson.7?fref=ts
Ms. Sunna Valdís Sigurdardottir
Student
AHC Hero
Reykjavik, Iceland
Sunna Valdis is the only AHC patient to have been diagnosed in Iceland.
She studies at Klettaskoli
https://www.facebook.com/sunnavaldis?fref=ts
Mrs. Ragnheidur Erla Hjaltadottir
Flight attendant (Icelandair)
Mother of Sunna Valdis
Reykjavik, Iceland
Ragnheidur Erla is the Vice-President of AHC Association of Iceland
https://www.facebook.com/susivira?fref=ts
Mr. Viktor Snær Sigurdsson
Student
Brother of Sunna Valdis
Reykjavik, Iceland
Viktor Snær studies at The Commercial College of Iceland
https://www.facebook.com/viktorsigurds?fref=ts
Prof. David Goldstein
Professor of Genetics and Development
Columbia University, NY, USA
Head of Research department at Duke University at the time of filming.
My research focuses on many aspects of human genetic variation including human genetic diversity, the genetics of disease, and pharmacogenetics. First at Duke University and now at Columbia University, my group, along with large networks of collaborators, has been responsible for a number of well-known discoveries including the gene responsible for Alternating Hemiplegia of Childhood and the role of the IL28B gene in treatment response to Hepatitis C infection.
http://www.igm.columbia.edu/profile/dbgoldstein
Prof. Arn M.J.M. van den Maagdenberg
Professor in Molecular and Functional Neurogenetics
AHC researcher
Leiden University
The Nederland’s
Professor in molecular and functional neurogenetics at the Departments of Human Genetics &
Neurology at Leiden University Medical Centre.
https://www.lumc.nl/org/humane-genetica/medewerkers/arn-mjm-van-den-maagdenberg?setlanguage=English&setcountry=en
Prof. Helen Cross
Professor of Pediatric Neurology
AHC researcher
London, UK
Professor Helen Cross was awarded an OBE in 2015 for her services to Children with Epilepsy.
She is the Prince of Wales’s Chair of Childhood Epilepsy at UCL-Institute of Child Health,
Great Ormond Street Hospital for Children, London and the National Centre for Young People with Epilepsy, Lingfield, UK.
https://iris.ucl.ac.uk/iris/browse/profile?upi=JHCRO62
Dr. Aicardi
Pediatric Neurologist
AHC researcher
France
Jean was born in 1926 in Rambouillet, France. He earned his MD from the Faculté de Médecine in Paris in 1955
and had his early professional training at the Hôpital des Enfants Malades, also in Paris.
It is how he lived those many years that made him an extraordinary figure in epilepsy and child neurology.
http://www.ilae.org/Visitors/Farewells/Aicardi.cfm
Dr. Kenneth Silver
Associate Professor, child neurology
AHC researcher
Shriners Hospitals for Children Chicago, USA
Kenneth Silver, M.D., is a pediatric neurologist at Shriners Hospitals for Children — Chicago and
co-director of the muscular dystrophy MDA-affiliated clinic at Shriners Hospitals for Children — Chicago.
He is board certified in neurology and pediatric neurology from the American Board of Psychiatry and Neurology, Inc.
As a pediatric neurologist he provides care for patients and investigates diseases of the nervous system,
which includes the brain, spinal cord and muscles.
http://www.shrinershospitalsforchildren.org/en/Locations/chicago/our-staff/KennethSilver
Prof. Mohammad Mikati
Professor of Pediatrics and Neurobiology
AHC researcher, pediatric neurologist and epilepsy specialist
Duke University, Raleigh, USA
Mohamad A. Mikati M.D., is the Wilburt C. Davison Professor of Pediatrics,
Professor of Neurobiology, and Chief of the Division of Pediatric Neurology.
https://dibs.duke.edu/scholars/mohamad-mikati
Ms. Małgorzata Szufa (Gosia)
AHC Hero from Germany
Student
https://www.facebook.com/gosia.szufa?lst=549121033%3A100004594710284%3A1488838075
Ms. Indy Lentze
AHC Hero from the Nederlands
Student
Here is her fathers Facebook page:
https://www.facebook.com/elwin.lentze?fref=ts
Mr. Malte Kempin
AHC Hero from Denmark
Student
Here is his mothers Facebook page
https://www.facebook.com/tanya.kempin?fref=ts
Mrs. Kaya Dion-Hawkins
AHC Hero from Montreal, CA
Student
Here is her mother Facebook page
https://www.facebook.com/caroline.dion.543?fref=ts
Prof. Kathryn J Swoboda
Swoboda specializes in inherited neuromuscular diseases and movement disorders, and is widely known for her
work on spinal muscular atrophy (SMA), a rare but devastating neurodegenerative condition that manifests in infancy or childhood.
Swoboda is also known for her research on Alternating Hemiplegia of Childhood
http://www.massgeneral.org/neurology/news/newsarticle.aspx?id=5396
Dr. Laufey Ýr Sigurdardottir,
Is a Doctor primarily located in Orlando, FL. Her specialties include Child Neurology and Neurology.
Dr. Sigurdardottir is affiliated with Nemours Children’s Hospital.
http://www.vitals.com/doctors/Dr_Laufey_Sigurdardottir.html#ixzz4aaZ09VuS
Dr. Matthew Sweney
Dr. Sweney is a pediatric neurologist and epileptologist who focuses on the diagnosis and treatment of drug-resistant
pediatric epilepsy. He is Medical Director of the Comprehensive Pediatric Epilepsy Program at Primary Children’s Hospital.
http://healthcare.utah.edu/fad/mddetail.php?physicianID=u0590648
Dr. Sandra P. Reyna
Is Assistant Professor of Neurology and Director of the Neurology Clinical Trials Unit at the
University of Utah and Co-Director of the Pediatric Motor Disorders Research Program.
https://www.linkedin.com/in/sandra-p-reyna-m-d-89119940
Mr. Jimmy Kiernan
AHC Hero from USA
Student
His fathers Facebook page
https://www.facebook.com/dennis.kiernan.5
Mr. Dennis Kiernan
Father of Dennis Kiernan
Boxing coach
Dennis Kiernan was born in Harlem, NYC and grew up in the Bronx, Brooklyn, and NJ.
http://www.blacksburgboxingandfitness.com/personal-training/trainers/
https://www.facebook.com/dennis.kiernan.5
Tara Newcomb M.S.
Is a licensed certified genetic counselor working with the Pediatric Motor Disorders Research Program at the University of Utah.
http://medicine.utah.edu/faculty/mddetail.php?facultyID=u0611648
Ms. Caroline Dion
Mother of Kaya Dion-Hawkins
President of the AHC Association of Canada
Police officer at the Royal Canadian Mountain Police.
https://www.facebook.com/caroline.dion.543?fref=ts
Gillian Bailey (Jill)
Mother of Lucy Bailey
President of the AHC support group
https://ahcuk.co.uk
https://www.facebook.com/jill.bailey.5815?fref=ts
Mrs. Mollie Erpenbeck
Mother of Austin
Mollie is on the board of the AHC Foundation in USA.
www.ahckids.org
https://www.facebook.com/search/top/?q=Mollie%20Weiler%20Erpenbeck
Mr. Austin Erpenbeck
AHC Hero in USA
Student
His moms facebook page:
https://www.facebook.com/mollie.erpenbeck
Mr. Jeffrey T. Wuchich
Father of Matthew Wuchich
President of Cure AHC
www.cureahc.org
https://www.facebook.com/jwuchich
Mr. Matthew Wuchich
AHC Hero from USA
Student
Fathers Facebook page:
https://www.facebook.com/jwuchich
Prof. Brian Neville
Professor of pediatric neurology
Emeritus Professor of Pediatric Neurology at University College London – Institute of Child Health (UCL-ICH).
https://www.epilepsyresearch.org.uk/professor-brian-neville/
Lynn A. MacDonald Egan
Mother of Kathleen Egan
President of AHCF – www.ahckids.org
https://www.facebook.com/lynn.macdonaldegan
President Ólafur Ragnar Grimsson
President of Iceland
https://www.facebook.com/olafurragnar.grimsson.39
Dr. Erin Heinzen
Columbia University – scientific advisor for the film
Erin Heinzen, Pharm.D., Ph.D
Assistant Professor of Pathology & Cell Biology
Deputy Director of the Institute for Genomic Medicine
http://sklad.cumc.columbia.edu/pharm/cumc/profile_new.php?id=379