Dr Kenneth Silver

Dr. Kenneth Silver was interviewed by AHCIM in July 2014

The purpose of AHC International Library is to collect information about AHC and related disorders and make them visible for everyone.

Doctors, researchers and family can share information on this media and together we can help each other get closer to the goal of having an effective treatment for AHC.

AHCIM will continue to interview interested parties that have information on AHC or related disorders to share .

For more information: www.ahcim.com

Contact us at ahc@ahc.is

Arn M.J.M van den Maagdenberg – London 2016

Arn M.J.M van den Maagdenberg, professor of neurogenetics, was interviewed by AHCIM in London 2016

The purpose of AHC International Media is to collect information about AHC and related disorders and make them visible for everyone.

Doctors, researchers and family can share information on this media and together we can help each other get closer to the goal of having an effective treatment for AHC.

AHCIM will continue to interview interested parties that have information on AHC or related disorders to share .

For more information: www.ahcim.com

Contact us at ahc@ahc.is

Laufey Ýr Sigurdardottir

Dr Laufey Yr Sigurdardottir was interviewed by AHCIM in July 2014

“You have to have faith in yourself (as a neurologist) and you have to listen to the parents”

The purpose of AHC International Library is to collect information about AHC and related disorders and make them visible for everyone.

Doctors, researchers and family can share information on this media and together we can help each other get closer to the goal of having an effective treatment for AHC.

Sunna and Ýr
Sunna and Ýr

AHCIM will continue to interview interested parties that have information on AHC or related disorders to share .

The Lentze Family

The Lentze family was interviewed by AHCIM in September 2014
Indy is diagnosed with AHC

“We can learn a lot from Indy because she lives for every day”

The purpose of AHC International Library is to collect information about AHC and related disorders and make them visible for everyone.

Doctors, researchers and family can share information on this media and together we can help each other get closer to the goal of having an effective treatment for AHC.

AHCIM will continue to interview interested parties that have information on AHC or related disorders to share .

For more information: www.ahcim.com

Contact us at ahc@ahc.is

Steven Petrou

Steven Petrou, Professor of physiology, was interviewed by the AHCIM in August 2015

Associate Professor Petrou is a Deputy Director, Head of the Florey’s Division of Epilepsy, and heads the Laboratory of Ion Channels and Human Disease, a multidisciplinary team of researchers with a focus on revealing fundamental mechanisms of disease genesis in the central nervous system. Current major areas of investigation centre on the development and characterisation of genetically engineered mice models for the study of human familial epilepsy. He works closely with industry and has several patents for his discoveries. In addition to his many roles within the Florey Institutes and the University of Melbourne, he serves on the editorial board of the Journal Neurobiology of Disease and the Investigators Workshop Committee for the American Epilepsy Society

Caroline Dion

Caroline Dion, mother of Kaya, was interviewed by AHCIM in Minneapolis, 2014

“Caroline found the diagnosis for her daughter without help from the medical community”

The purpose of AHC International Library is to collect information about AHC and related disorders and make them visible for everyone.

Doctors, researchers and family can share information on this media and together we can help each other get closer to the goal of having an effective treatment for AHC.

AHCIM will continue to interview interested parties that have information on AHC or related disorders to share .

For more information: www.ahcim.com

Contact us at ahc@ahc.is

Dominique Poncelin

Dominique Poncelin is father of Patrik was interviewed by AHCIM in August 2014

“Patrik has very severe seizures and has to be put in an artificial coma for 8-20 days two times a year on average”

 

Landis Pino

Landis Pino, Mother of Madison and Marley, was interviewed by the AHCIM in October 2014

Landis has TWO children affected by AHC which is extremely rare.
When the interview was done she did not have the confirmation that her youngest daughter was affected.

Helen Cross

Professor Helen Cross was interviewed by AHCIM in London, May 2015

“If we find a treatment for AHC it may well help other disorders”

“the children who now are negative for mutation in ATP1A3 may teach us even more then those that are positive”

http://www.gosh.nhs.uk/medical-information/staff-z/helen-cross

Meg Krenn

Meg Krenn, mother of Emory, was interviewed by AHCIM in August 2015

Meg and Bill Krenn have 4 children together which is not common among AHC families.
They have a very positive outlook on life.
Meg tells us about their life with AHC and that they will never lose hope