Article about the making of AHC documentary in Umhyggja magazine

In the newest edition of Umhyggja Magazine there is an article about the AHC documentary.
“Preparations for the AHC documentary are finished and filming has already begun. The documentary will be filmed in Iceland, the US and in the Nederlands and we estimate to stop filming coming October.

The Documentary will review the history of AHC from when the disorder was first discovered in 1971 and we will follow the life of Sunna Valdis who is the only AHC champion in Iceland. We will follow Sunna in her daily life and watch the effect AHC has on Sunna and her family. The film crew will follow Sunna to Minneapolis. MN, where she will meet some of the best AHC specialists in the world. The documentary will contain interviews with the specialists and with families that have been fighting for a cure for AHC.

Heimildarmynd-umhyggja

The Documentary will be around 40 minutes and will be translated in at least 8 languages.
The producers will distribute the film all around the world and also send it to film festivals.

Sigurdur Holmar Johannesson president of the AHC Association of Iceland and Sunna´s father says tells us that the main purpose of the film is to raise awareness and find the undiagnosed AHC champions in the world that may be as many as 7000 so that they may receive best possible care.
“We desperately need to expedite the research in order to find cure”

Third Symposium ATP1A3 in disease

This third ATP1A3 meeting is a follow-up of the 2012 meeting in Brussels (www.enrah.net) and the 2013 meeting in Rome (www.symposium-atp1a3.tk).

Netherlands

Friday, August 29th 2014

16.00-22.00: ATP1A3 Meeting registration & hotel check-in
20.00-22.00: Official opening of the Symposium and patient’s organisation information evening

Saturday, August 30th 2014

8.30-12.00: Genetics of ATP1A3 pathologies
15.00-17.30: Clinical aspects of ATP1A3 pathologies
18.00: Joined program with the 14th International Conference
Na,K-ATPase and related transport ATPases: Structure, mechanism, cell biology, health and disease.

Sunday, August 31st 2014
Joined program with the 14th International Conference
Na,K-ATPase and related transport ATPases: Structure, mechanism, cell biology, health and disease.
08.30-12.00: Physiology, Medicine and Therapy
14.00-16.00: Physiology, Medicine and Therapy
17.00: Departure
Program Committee
Chairs: Jan Koenderink and Thomas Friedrich
David Goldstein
Tsveta Schyns
Arn van den Maagdenberg

Sponsors
The sponsors of the third symposium are the AHC organisations ACHA, AFHA, AHCAI, AHCF, AHC-Deutschland e.V., AHC Vereniging Nederland, AESHA, A.I.S.EA Onlus, Cure AHC.

ENRAH is acknowledged for supporting the organisation of this symposium.

Symposium Registration
Registration for the Symposium is open from 15 April 2014.
Please note, that there is an “early bird” reduced registration fee before May 27 June 8, 2014 (see below).
Cancellations received before 31 July 2014 are subject to a charge of 25% of the registration fees for reservation costs. After 31 July 2014 full payment will be requested and refunds will not be provided. Transfer of the registration to other persons is at no extra cost.

Registration Fee
The registration fee covers the Symposium abstract book, coffee breaks and lunches on Saturday and Sunday, 30 and 31 August , and dinners on Friday and Saturday, 29 and 30 August 2014.
Hotel costs are not included. However, we made reservations (to reduce the costs) and will send you an offer as soon as the early bird registration closes (May 27 June 8, 2014).

Standard, 550 euro.
Reduced Registration Fee 370 euro *.
Reduced Registration Fee 230 euro * / **.
* For health professionals and non-profit organisations registered before May 27 June 8, 2014
** For registered participants in the 14th International Conference Na,K-ATPase and related transport ATPases: Structure, mechanism, cell biology, health and disease.

Registration
For registration, please note that this requires two steps:
- First, fill out the registration form: Registration and Payment.
- Second, send the completed attached form. Please note, that registration is only complete when confirmation of payment has been received.

Abstract Submission
Oral abstract submission deadline: May 27 June 8, 2014.
(must submit by this date to be considered for a talk)

Final poster abstract submission deadline: July 21, 2014.

Abstract submission guidelines:
• Abstract title field allows a 200 character maximum.
• Abstract body field allows for a 350 word count maximum.

To submit an abstract via the EasyChair system, please follow the link Abstract Submission.
If you do not have an EasyChair account, the system will first ask you to generate a personal EasyChair account. Once this is account created and confirmed (by clicking a link sent by E-mail from EasyChair), you are easily directed to the ATP1A3-2014 Head-page. By clicking the button “New submission” you can enter and submit an abstract.

Should you have questions or need support for abstract submission, please, contact atp1a3@p-atpases.org

Jan Koenderink and Thomas Friedrich

The making of the AHC documentary

At the AHCF family meeting in Minneapolis the AHC documentary film crew was busy filming and taking interviews with parents, AHC patients and doctors.

AHC-doc-AF-og-SJ-300x225

The AHC foundation and the Hilton hotel were accommodating to us and made us feel really welcome. The days of shooting were busy and we even had to add a day to the crew´s stay because we had so many people to interview. All in all we interviewed 34 people in 4 days.

Andermann

The persons that have been gracious enough to participate in our documentary have been involved with Alternating Hemiplegia of Childhood since the disease was first discovered. Name´s such as the Dr Eva and Frederick Andermann, Dr. Silver, Dr. Swoboda, Dr. Reyna, Dr. Sweney, Dr. kevin Ess, We interviewed the president of the AHCF Mrs Lynn McDonald Egan and president of the AHC Foundation of France Dominique Poncelin and some amazing parents and AHC champions.

AHCF

Our next interviews for the documentary will be in Lunteren, Netherlands at the 3rd ATP1A3 symposium. Thereafter we will be shooting in Reykjavik, Iceland, Raleigh NC and in Nashville TC.

We are working on a website for the documentary that should be up and running within a few days. www.ahcdocumentary.com where you will be able to follow the progress of the documentary. We will have trailers, pictures and clips.

We are still looking for potential financial supporters for the documentary. If you want to support the project please contact siggi@ahcfe.eu

Looking for all Canadian AHC Families

AHC Canada logo

The Canadian Association for AHC is looking for families affected by Alternating Hemiplegia of Childhood.
Canada is a very big country populated by about 35 millions people, therefore it has been difficult to collect the exact information from all individuals affected by this debilitating disorder due to the population being spread all over this large country.

The goal is to reach all Canadian families affected by AHC. Presently the Canadian Association for Alternating Hemiplegia has a short list of Canadians suffering from AHC but would like to make sure they have the information of ALL Canadians affected by AHC.

Upon reading this, would you all be so kind as to ask any Canadian Family you know is afflicted by AHC to get in contact with AHC Canada either to confirm they have their proper contact information or to establish a first contact.
Caroline Dion
President of Canadian Association for Alternating Hemiplegia
http://www.ahc-canada.ca
cdion3@videotron.ca

AHC DOCUMENTARY – WE NEED YOUR HELP…

The AHC Documentary project is ongoing and we are still looking for supporters/sponsors.

We have opened an Indigogo crowd-funding page that you can find HERE

Please support the project.

AHC doc aðalmynd

Ólafur Darri and Sunna Valdis

DOCUMENTARY ABOUT ALTERNATING HEMIPLEGIA OF CHILDHOOD
1. ENTRANCE
2. STORYLINE
3. CREW
4. PREPERATION, RECORDING AND PROCESSING
5. ESTIMATED COST
6. MARKETING AND PRESENTATION

1. ENTRANCE
WHAT IS ALTERNATING HEMIPLEGIA OF CHILDHOOD (AHC)?
AHC is a rare naurological disorder that causes temporary paralysis in one or both sides of the body. AHC is accompanied by Dystonia, Nystagmus, autism, often epilepsy and mental delay. AHC greatly affects the daily life of the patient and his/her family. The AHC episodes can be caused by noice, bright light, water exposure, crowded places etc or they simply start out of the blue.
Today there are around 800 diagnosed AHC patients around the world but the prevelance is 1/1.000.000 so there could be 7000 undiagnosed AHC patients out there.

The mission of the project is to raise awareness and to locate the undiagnosed AHC patients so that they can receive best possible care. The mission is also to expedite research and find a cure for AHC.

2. STORYLINE
We will review the history of AHC since it was first characterized in 1971. We will follow Sunna Valdis (8) who is the only AHC patient in Iceland, we will monitor her daily life and follow her to an AHC family meeting in Minneapolis where she will meet with doctors and AHC specialists. There will be interviews with experts on AHC and interviews with AHC families and key persons that are fighting to cure this terrible disorder.

3. CREW

ÁGÚSTA FANNEY SNORRADÓTTIR Moviemaker graduated from Collage of the Canyons in California, USA. Ágústa Fanney has worked on several projects in the US and in Iceland. Ágústa Fanney has already made two shortfilms about AHC and she will be directing the project.

SIGURÐUR HÓLMAR JÓHANNESSON President of the AHC Federation of Europe will be working on the project on behalf of the AHC community. Sigurdur is an Air Traffic Controller Officer by profession. Sigurður voluntairs in various commities and working groups on behalf of the AHC community and will be working on this project as a manager and treasurer. Sigurdur is Sunna Valdis´s father.

ÓLAFUR DARRI ÓLAFSSON is a well known artist in Iceland. Ólafur Darri has recently played Hamlet in Borgarleikhús in Reykjavik Iceland. He has been in known Hollywood tv showns such as Banshee and True Detectives and in movies such as Walk among the tombstones starring Liam Nesson and The secret life of Walter Mitty, starring Ben Stiller. Ólafur Darri will narrate the documentary. Ólafur Darri is the protector of AHC association of Iceland and has been a major supporter for many years.
Here is a link to IMDB that shows Ólafur Darri´s recent work.

http://www.imdb.com/name/nm0959963/

4. PREPERATION, RECORDING AND PROCESSING

The documentary will be filmed in Europe and in the United States. Estimated preview date is 29th February 2015 on Rare Disease Day.
The preperation phase is finished and filming has begun. We estimate that filming will be finished by late October and processing will take 3-4 months.

5. ESTIMATED COST
The estimated is 50.000 usd.

6. MARKETING AND DISTRIBUTION
The AHC Alliance will distribute the film to all the AHC association worldwide which will distribute it to local TV stations and institutions.
The film will be distributed within the rare disease community and it will be sent to short film festivals and documentary festivals in Europe and the USA.
The documentary will be in English but will have subtitles in at least 8 languages, French, Spanich, Italian, German, Deutch, Icelandic, Polish and Danish

US Family Meeting Update

USAlogo

The Family Meeting is fast approaching and we wanted to update you on some of the plans and also provide you with some things to consider. Thank you to those who have already signed up and a reminder for everyone who is still planning on coming.
The link to the family meeting update is HERE

Cannabidiol: Pharmacology and potential therapeutic role in epilepsy and other neuropsychiatric disorders

A new publication on the possible effect of CBD for neuropsychiatric disorders

CBD grein

From the publication:

Cannabinoids in OtherNeuropsychiatric Disorders
Cannabidiol has been evaluated as a therapy for other
neurologic and psychiatric conditions. Some of these disorders,
such as neonatal hypoxic-ischemic encephalopathy,
can be associated with seizures. Other disorders, such as
anxiety and psychosis, are often comorbid conditions in
PWE. Activity of CBD in conditions that may lead to epilepsy
or coexist with epilepsy make it an attractive therapeutic
compound because of its potential to affect the
underlying epileptogenic process or target some of the additional
disabling symptoms of the disease.

More on the publication HERE

HELP US FIND THE LOST AHC CHILDREN

220x194px_AHCDOCUMENTARY

The AHC International Alliance is working on a documentary about Alternating Hemiplegia of Childhood.

The documentary will review the history of AHC from 1971 when it was first characterized.

There will be interviews with families and professionals that are on the forefront of the disease.

The documentary will be translated in at least 8 languages.

The purpose of the documentary is to find the undiagnosed AHC champions, raise awareness and to expedite research on AHC.

Please go to INDIEGOGO to support the project

Thank you so much