Door en voor mensen met een visuele beperking en hun omgeving
Of and for visual impaired people and their social environment
Batten Disease e-mail group: Let's Begin!

Hello every one, special warm regards tot Knut Brandsborg (2004, I was in Norway)
Last weekend we had an article in a Dutch news paper: Why are my both daughters going to die?.
About a father who has written a book named: a kiss and a hug.
This father has three daughters and two of them with batten-spielmeyer-Vogt.
I will try to share this article with you, please notice that English is not my usual languages. I will try to make an impression of this article. Just to share it with you as professionals and most of al to give support to parents from parents. And maybe this could be a way to implement the ICF procedure,  go more over your own borders, see the challenge of sharing knowledge.
One of the children is born in 1994 and died in 2010 and the other one is born in 1996 and still alive, now 15 years old.
It is a story from a father who dreamed about a warm happy family with 3 beautiful daughters. He had a house and a lovely wife; this was the dream live he wanted.
This father is 43 years old on this moment, divorced. Maybe that every thing he tries to let behind him was too much.
He was a soldier in Bosnia, and have now a PTTS of all this. When he came back in 1995 he saw his oldest daughter for the first time and from that moment on they have to know each other better, and that was what happened from that moment on,
On 16th of September 2010, it was a day like every day, and she was going to a special house for very sick children, he was waving his daughter goodbye. She was 16 years old, totally blind, sitting in a wheelchair, physical notting, but always happy, glad and spontaneous as always and lovely as ever. But then she gets a long bleedings and she died. He described a story where we al now that there is notting to do against it. The only stadium she did not have to go was: all days laying in her bed, and get fluid food. But he describes his powerlessness. He talked about how he struggle with this sickness and you as a parent can do nothing, against it.   It not normal that you as a parent bury your children, and he knows she was the first one and that hid him very much.
When the oldest daughter was going to the primary school, her teacher notices that: she could not see very well. Within 7 months she is totally blind. And then suddenly he is looking into a magazine, and his eyes reed a story about a mum with also two children who are incurable sick, they where low sided, have epileptic assaults, the diagnoses where that the children die in a few years there is nothing to do against it.
He cried because al the symptoms where almost the same as his oldest daughter, this could not be true. Yes she was blind but his hope was that this was all, and nothing more. He would not think about that his beautiful girl also have these diseases.
The oldest daughter self keep here dreams into here mind, she want to be a teacher and a mom. She learnt to reed Braille and she learned to walk by her self’s. Sometimes she cried and ask why can I she notting any more?,  and of course the father tell here if it was possible that he would like to give one of his eyes so that the both can see a little.
Then in 2002 the teacher of the second daughter also notices a problem and she and her youngest sister, both, has to go to the hospital for several researches. The youngest one is healthy but the second one has also batten disease, his live is up side down, his marriage is broken because there is too much to handle. The oldest one is going to live by here father and the other two live by there mother, both in a new home where there is no upstairs.
The father and the mother have to accept the fact that they can do nothing against it, and see how the children suffering. In the mean time the oldest one lost her memories, and can not walk any more.
In that time he meet a journalist who talk about the time in Bosnia and al his memories came back. Too much to handle for him. He did not have any idea what happened on the other side of the compound. He field that he has failed also for his two daughters feels his self responsible but he could do nothing. He could not lose his own sadness and feelings.
The oldest one enjoyed every moment that people talked with her and touch her of give her a big hug, she enjoyed the moment that they have free time to do nice things together.
She did not know what disease she had, she feels young and growing up an adult, and they have questions where he cannot give an answer to because he thinks that when you tell them about there disease that they will be uncertain. Still they feel something is not being oke, and their live is slipping between his fingers.
The second one is on this moment better stadium then the oldest one, on this aged, she is only low sided en can still walk some small routes. Deep inside she knows, the danger, and tells him I stronger isn’t daddy?? She will search for confirmation that she is stronger then the oldest one, and that she can live longer.
Now and then the father has to take care for the youngest one as well because she needs his attention also. And she has also worries, sadness about both of her sisters.
With al this writing in a book the father tries to give everything a place. Every day he feels the pain off the lost of his oldest one and knowing that the other one cannot live as long as it should be normally. 
His second nature is how to accept the pain. You have to allow it; it must if you would like to survive.
On this moment he is trainer and coach, but he never tell his clients about his own situation.
But because of his daughters he realises that live is not only for presenting but also enjoy live and be happy with your beloved.
Till so far the story from AD 10 September. The book is, I think, only in Dutch and to buy
I hope you all have an impression from a father and I will send him strength to hold on.
I realise that my daughter have only uveitus.  She is study economics law en rights, and after that she would like to study philosophy and I am so proud on her. But realise all that I also com from far, with my sadness, and that because all of this, I have a PTSS and a broken marriage. I was the chairman of a parent organisation in Holland and know I have my own organisation MI ta stimabo. I like to take I try to care /share with or for parents and people with visual handicaps and their families.
For my daughter, the only concerning thing is: she is always tired, every day, we think because of her low sight, or the eyes drops for her glaucoma, but with help from all of us, she can do so much.
For shore you recognise lots of this story, again sorry for my not correct English.
What I mean to say with this story: let we all do what we can together the professionals and the parents lease do not think the already know it, please ask the other and share every thing reach out your knowledge and share it with the other professionals. And above all help and be there for the parent, dear to do that.
I go in November to Austria and maybe I meet parents in Austria in November and here more of their stories.
One word, one moment can mean so much, stay always your self keep believing in your inner feeling.
I say this always to parents and to professionals.
That brings me to the ICF meeting in Graz in May and I will share this with you all.  Maybe this article about ICF ,  is something because cooperating is the best we can do.( I think we missed it so much)  look also to the website of WHO  and  the base in this all is: trust each other know what best is for your child and convince the other that you together know/ and can do, what is  the best for the child.
I ve send a copy to the chairman off the Danish parent organisation as well. Look also to<
 Please find below the resolution of the General Assembly of ICEVI held on July 21, 2006. KL
Resolution 5
That in order to enhance and facilitate the work of ICEVI and the "Global Campaign", ICEVI hereby endorses its partnership with the newly established "International Association of Parents of Children with Visual Impairment (IAPVI)" and the formation of parent organizations in every country.  The ICEVI Regional Chairs are hereby asked to collaborate with IAPVI and other such organisations in their regions, so that all regions are represented.
ICEVI is regularly publishing articles on Parents' advocacy written by Susan and other representatives of Parents Group.  We are also encouraging the regions to work closely with Parents' Organisations. 
Therefore, the collaboration is on and we should strengthen it further, particularly at the regional level.
From a Sunny Holland my warmest regards.
Angelette Akkermans

Dear All,

 In a minute you will understand that I'm not a professional in this field! Still I would really like to be a part of the group: Listen in on your debates and - if appropriate - comment and answer whatever questions you might have.

 I'm father of Thorbjørn who suffers from Battens Disease. He is 15 years of age. He got blind quite early and these past 8 months his language is rapidly decreasing. He is very interested in as different universes as Pokemon and Nordic mythologi. He really knows how the gods and giants are connected, when and where things took place and how this affected the history . Also he is always ready for a duel in world capitals. For the moment he knows about 110 to 120 capitals... Somebody names a country and he replies the name of the capital of this country.

 Of course it is a monumental loss, when the ability to tell about these things fades.

 I work as a professional in the danish prison and probation service. I manage a quite large facility which offers drug rehabilitation to offenders. This is a tough but also very giving line of work ... and I shall not tire you further on that subject.

 In  Denmark the organisation around children and young peoble with Battens Disease are divided into three areas:

 Local Government who - within the limits of the law and (not least) the experience of the individual caseworkwer, socialworker, pedagogue and teacher - helps the youngsters and their families.

 Battens Disease Expert team consisting of 1 socialworker and 2 pedagogical consultants on full time, a psycologist and a medical doctor some hours as consultants ... and 2 (two) parents on voluntary a basis. The team gives advise to the affected families, local government, institutions and peoble who work locally in this field.

 The Battens Disease Relatives foundation. We meet regularly several times each year and most of the affected families appear on our meetings. On these meetings we help each other as good as we can. For the time being we know of 23 persons with the disease.

 I was in the expert team as a parent. I have been to the conference in 2006 in Örebro in Sweden and in Dublin in 2009. This spring I chose to leave the expert team. I am now member of the board of the foundation.

 Incidently, in Denmark the disease is known as Spielmeyer-Vogts disease.

 I'm looking forward to "meet" you all.

 Yours sincerely

 Carsten MUnkholm

Emne: Let's begin!
It's a beautiful, sunny day here in Riverton, Utah, USA!  It's the perfect day to launch our email group.  I think it is fitting to first introduce ourselves.  Please hit "reply all" and tell us who you are, where you're from, and what do you do.  I'll start:
My name is Wendy Bills.  I live in Utah and have done all of my life.  I am married with two children and two grandchildren.  I started a teaching career in 1992.  One of my first students had Batten Disease.  I had the privilege of teaching her for over a year until she passed away.  I should say I had the privilege of learning from her for over a year.  Her mom was a great lady that encouraged me to present at the Batten Disease Support and Research Association conference in 1993.  I believe I have missed only four conferences since then.
I was on the BDSRA board until my health no longer permitted.  I led the education committee.  We wrote four editions of "Teach and be Taught," made three videos for teachers, and trained a group of wonderful consultants to help schools and families.  I've had the wonderful experience of traveling to many states to consult and present.  It has been an extraordinary journey.
I have a Ph.D. in special education from the University of Utah.  My research was with positive behavior supports for students with Batten Disease in the school setting.  I submitted my research to one journal for publication but was denied.  I am open to suggestions as to journals that may be interested.
Internationally, I've traveled to Netherlands twice and Dublin - all for Batten Disease.  I look forward to hearing about each of you and learning more from my knowledgable friends.  The floor is now yours.......Thanks!

Howdy to all!

I am Emily Calvert and have lived in Texas all of my life except for 2 years in Alabama. In those 2 years, our daughters were born who are now married and have blessed us with 3 grandchildren and 1 more on the way.
I have been blessed daily to teach 3 people with Batten Disease. I started with these students when they were kindergarten and first grade and they are now 17, 18, and 18 years of age. I have learned from Wendy Bills, the students, and their families many lessons. The rest of my job consists of being a teacher of students with visual impairments with a varied caseload. This will be my 32nd year to teach students with visual impairments.
Can't wait to learn from you all!
Emily Calvert

I am Johan Björk and I live in a city called Örebro in Sweden. I am married and have two small children, both of them girls. The oldest is 3,5 years and the youngest 1 year.
I work at a department in Örebro County Council called SPRIDA and have been doing so for almost 5 years now. SPRIDA is the IT part of the center of the technical aids centre in Örebro. What is special with us is that we have a developer working here (me) so that when we meet people with needs that we can't find a suitable solution for, we have the possibility to create one.
In the early 90's we got contacted by a parent to a child with Batten Disease and that lead to a project to develop a computer aid for that target group. The program that got developed was called Struktur and in the beginning it was developed for DOS. Today the program is called Sarepta and is used not only in Sweden but in several other countries. We cooperate with the team that works with Batten Disease at the ResourceCenter Vision and together we hold courses in Sarepta several times every year for parents, teacher etc. In these courses we do not only learn to use the program, but the people that attend also get the possibility to meet other parents and teacher that faces the same problems and challenges that they do.
I do not want to make to much advertisement about the program now but it is how I got involved with Batten Disease. If you are interested in learning more about the program I have handouts in english and swedish that I can send to you.
I am looking forward taking part in this email group and I am certain that I will be able to learn a lot. Hopefully I can contribute too with some of my experience that I have had over the years.
Kind regards
Johan Björk

Good Afternoon,
 My name is Lindsey Adams and I am a special education teacher in Murray, Utah. I have my master's degree in school counseling, but right now have the privilege of working under Wendy Bills as a 9th grade case manager.  I have a little boy who just turned 3 last month and is the light in mine and my husbands life. I am about to begin my 8th year of teaching and have been able to teach children with a large spand of abilities in all ages ranging from Kindergarten to Post High.
 I became interested in Batten Disease my first year of teaching when Wendy was my Vice Principal at a school for students who have severe disabilities. Wendy and I became dear friends, and when she left our school and became the Special Ed Director in the district I had hoped to teach in, she offered me a position that I happily accepted. From that point forward Wendy helped me get my foot in the door for some training in Ohio to become a consultant for Batten Disease.
 I am currently an educational specialist for BDSRA and have had a great opportunity to be trained by Wendy and travel with her to learn the best ways to consult. I had the opportunity to do my first solo consultation in Washington state this past March, and learned so much. I have also been able to participate in the recordings of the last two "Teach and Be Taught" videos for teachers and specialists who are working with children who have Batten Disease.
 I have never taught a child in my classroom who has Batten Disease, but in my consultations I have learned there truly is something incredibly special about these kids, and they have touched my heart in a way not many other students have. It is a privilege to be a part of this group, and I am looking forward to learning more about the disease, helping those effected by this disease, and ways to become a better professional, educator, and consultant all around.
 Looking forward to our group!

 Take Care,
 Lindsey Adams

Hello all!  I am really excited that Wendy has started this group.   I am currently the President of Batten Disease Support & Research Association (BDSRA).   I have been active in the organization since 2002.   When Wendy Bills retired from our Board of Directors last year, I became the chair of the Education Committee of BDSRA.  However, I have to confess that Wendy really still runs the show on our education programs.    My focus has been primarily in Batten Disease research and trying to get more funding from the U.S. government.  I am on the advisory council for the branch of the National Institutes of Health that provides research funding for neurological disorders (NINDS).  

 Most importantly, I am the mother of Maddie, who passed away from late infantile Batten Disease last January.  I know first-hand the devastation of dealing with the disease.  We were so fortunate to have Maddie's teacher to help us through all of the challenges.   Her teacher is one of the most knowledgeable, compassionate people I know.   Teachers are such an important resource for our families. 

 In addition to my work with BDSRA , I have an 11 year old daughter, Megan (who is a carrier, but thankfully unaffected by the disease).  I am also an attorney with my own law firm.  I help clients with estate planning and with administering private charitable foundations.

 I look forward to being part of the group.

 Kim Zellmer      

I am Knut Brandsborg, a specialist in clinical psychology. I have been working for about 30 years at Huseby Resource Center for people who have a visual impairment in Oslo, Norway.
I work primarily with blind children from 0 to 6 years and their families, but also with older children, youngsters ans some adults, with varying degrees of visual impairment.

In Norway, the other of our two national resource centers (Tambartun) has the main responsibility for the Batten Group. Nevertheless, I have been in contact with quite a few Batten Children and their parents over the years. Some 20 years ago I had an article plublished in the Norwegian Journal of psychology called "Mental reactions and psychological needs in families that include a child with a progressive disease." I used Batten's as the primary example. It has only been published Norwegian, but this is to tell you that I have a strong interest in this field of work, along with a host of others in the area of visual impairment.

I shall be having some major surgery in the near future, so I will be away form work for some time. Hope to be able to participate and contribute in the netwerk later on.

Best regards
Knut Brandsborg

Hi and greetings form nothern Europe, Finland and Oulu. It has been a great pleasure to learn to know new people via this email list. I work as a special needs teacher in Tervavayla school. Tervavayla is a school and also a resource center for children with multiple needs; we do a lot of counseling work in northern part of Finland. I work mainly with pupils who have a physical disability, many of them have problems with visual processing. I look forward to learning and sharing.

With best regards, Eija

Hello everyone!
My name is Kim de Verdier and I’m a lic. psychologist. I work at Resource Centre Vision, a national resource centre for children and young people with visual impairment in Sweden. The resource centre has two parts, located in two different cities: Stockholm and Örebro. I’ve been working in the resource centre in Stockholm for twelve years now, and my main field of work is psychological assessment and education of parents and teachers.
I find the initiative with a network about Batten Disease great, but I was a bit surprised to find myself on the mailing list. Maybe I signed up for a list but didn’t realize what kind of list it was, when I visited the ICEVI conference in Dublin the other year? I meet children with various diagnosis, but I have nearly no experience at all of Batten Disease. Our resource centre in Örebro, where they specialize in MDVI, has a special team for children with Batten Disease, so these children rarely come to us in Stockholm. Therefore I don’t think I have very much to contribute with in this network. But I wish you all the best of luck in your work!
Best regards Kim de Verdier

My name is Thomas Ragnarsson and I am a low vision instructor. I work here in Sweden for Örebro county council and mostly I customize computers for persons with low vision or with no vision at al. Our department is called SPRIDA. We are 15 persons with different professions. For example occupational therapists, technicians, speech therapist, teachers and low vision instructors. Our group also contains a programmer (Johan who also is a member of this e-mail group). We develop programs in areas where we can not find programs on the common market. We have worked with a program special developed for persons with Batten Disease for 20 years.
I have worked with children with different functional disorders in schools and institutes, most of my working life. For example 5 years at a school called Ekeskolan. The pupils have visual problems combined with other functional disorders at the school. During the years at Ekeskolan I had the privilege to be the teacher for a girl with Batten Disease. I also worked 2 years at a low vision clinic and since 1990 I have worked part or full time at SPRIDA Communication Center.
I am married to Monika. She is a teacher. We have a daughter called Linn. She is 22 years old and she is a professional dancer. Al three of us live in the city of Örebro.
I am looking forward to be a member of this group. I think we can learn a great deal from each other.
Kind regards
Thomas Ragnarsson

Hello everyone,
My name is Claudia van Alfen. I am a Physician for Intellectually Disabled and working for Bartiméus, an organisation for people who are visual impaired in Doorn the Netherlands. I am one of the consultants for the NCL centre of expertise and work since a year for the NCL centre of expertise. We multidisciplinary guide and treat children and adolescents with NCL and advice care takers and professionals.
Since half a year we have collaboration with the university hospital in Utrecht. We have started a combined NCL consultation hour. We are very pleased with this collaboration, because it makes it possible to do scientific research.
In Doorn we have several group homes, workplaces and a school for people who are visual and intellectually disabled
We have also a group home that is specialised in the care for NCL.
In this place stay children and adolescents with NCL, mainly CLN3. At the moment 4 children (between 9 and 16 years) and one adult live here during the week.
I am looking forward taking part of this email group.
Kind regards,

 Claudia van Alfen
 Physician for Intellectually Disabled

Hallo everyone,
The folowing is a  part from my biography:
I have been the director of the Typhlological Museum since 2002, which is the museum for and about visually impaired people, adjusted to the people with all kinds of  disabilities, the museum which relates to the  current problems in society, like the problems of elderly people, violence, PTSD… During that period many positive changes have taken place, namely the complete reorganization of the Museum’s work. I have  been an employee of the Museum since 1995, acting also as a senior curator. I have an MA in special education and I am presently taking PhD at the Faculty of Education and Rehabilitation Sciences at the University of Zagreb, Croatia. I was the project manager of adaptation of the Museum, and the author of the script for one section of the Museum’s permanent exhibition, opened in 2008. For this project, the European Museum Forum nominated the Typhlological Museum for the European Museum of the Year Award in 2010. I represented Croatia as a partner country in the project ‘Art for all’, on the adjustment of art to people with visual impairment, and I held lectures at conferences in Vienna (2006) and Marburg (2007). I participated in many conferences, co-authored several exhibitions, published articles in publications and I am a member of several associations.
I'm 49, married and I have two children. Lea is 21 and Sven is 17.
I am looking forward to taking part in this email group.
Kind regards,

Zeljka Bosnar Salihagic, MA in special education

Dear colleagues,
my name is Birga Gatzweiler and I live together with my husband and three teenagers (!) in Munich. As a psychologist I work with small children with special needs and once a week with multiple disabled visually impaired adults in the “Südbayerische Wohn- und Werkstätten”. This institution is one of the few places where persons with NCL live and work … and die. In the last ten years  we took care of three young men. Although I am not a specialist in Batten Desease I am very interested in the field of grief an bereavement (and trauma) in persons with developmental disabilities. In my workshops I try to point out how necessary and  valuable it is to focus on this emotion, encourage to work with it and provide methods. In so far I would enjoy to take part in the e-mail-group!
With warm regards from Munich . It is so hot today that I will go to have a good cold Bavarian beer this evening
Dr. Birga Gatzweiler

I am Paula Sterkenburg and as Claudia I also work at Bartiméus in Doorn - The Netherlands. I also work at the VU University in Amsterdam. I have little knowledge on BDSRA. My field of interest as a clinical psychologist is the 'attachment theory'. Using the attachment theory for interventions but also voor prevention of problem behaviour. We found the buffering effect of relations on stress. This is my focus of research (PhD: stress, attachment and psychopathology) in the field of care for persons with disabilities.
I am glad to join this group and am looking forward to learn from each other. I very much enjoy working with children and adults with disabilities.
Knut wrote that he has to go into surgery. Hope you will be back soon - best wishes!!
Kind regards to all!
Paula Sterkenburg
Hi All,
I am a speech-language pathologist in a school system in Grand Rapids, Michigan, USA.  My involvement with BDSRA came about because my nephew was diagnosed with the disease.  I've been through Wendy's education consultant training and I've worked with a few families in navigating the educational system, providing training and consultation.

Hi. I was the mother of a Variant Late Infantile boy named Shiv. He passed away last year at almost age 10. We live near Washington DC. He was my guru and spiritual teacher. I am lucky to have been his mom. I learned a lot and have been pleased to learn of all of the developments in the field of Batten Disease research. We attended the conference last year for the first time. I have 2 daughters, 15 and 3. I would love to help this forum in any way possible.