The "NCL-Gruppe Deutschland" (NCL-Group Germany) is a parent-support organisation representing the interests of children and families affected by NCL.
Our main objectives are
- to help parents find the best medical treatment and highest quality support for their kids
- to bring parents together so they can share thoughts, feelings and experiences
- to give advice to the families affected
- to organize holiday camps for the kids to provide respite for the families for a short time and to allow the kids to socialise
- to organize meetings and seminars for parents, children, doctors and assistants
- to advance the medical research of NCL
- to raise awareness of the disease with public authorities
The NCL-Group was founded in 1989, emanating from the VSS-Group (Vogt-Spielmeyer-Stock) which was confined to northern Germany.
Currently, it consists of about 400 registered members. The Board consists of 8 members, all working voluntarily. In addition, 4 regional groups (North, West, East and South/Central have been created to provide more local support for families.
During our weekend seminars - as well as at regional meetings - parents have the opportunity to exchange experiences. This enables families to acquire new strength and courage for the tough, everyday life with an NCL child. In addition, this mutual support is important when it comes to new legal regulations or handling issues with the public authorities.
We have had good experiences with the following regular events that happen on a yearly basis:
- annual meeting for all members, taking place for one weekend every Autumn. While the children have their own program of events and are taken care of by supporters, parents are free to join workshops, attend talks given by scientists and medical professionals, and exchange experiences with other families
- regional meetings – organised by each regional-group, e.g. Summer Fete, Christmas Party
- weekend seminars for mothers, fathers oder siblings, taking place in a different city every year
- holiday camps for the affected kids during the Easter and Summer holidays, lasting 10 to 12 days
- weekend seminars for caregivers
Articles of Association = Satzung
Tax exemption notice = Freistellungsbescheid
What we have done in the last 12 months - Oktober 2016
We have offered information and help to parents with NCL-children, their relatives and friends, therapists, teachers, students and pupils and all other people who were interested in NCL - in long phone calls, by email, through personal conversations, via our website and on Facebook (official site and closed group) and with the help of our information material.
We have sent our flyers, our brochure (Blaues Heft) and our other information materials not only to the above mentioned, but also to hospitals and a pharmacy, we had an information stand on the Rehacare in Düsseldorf (14.–17.10.2015) and have attended activities in several cities on the day of rare diseases to inform about NCL (20.02.2016 in Dessau-Roßlau, 29.02.2016 in Hannover, 28.05.2016 in Rostock) to raise awareness. Members of our association have given a lecture at the 42nd anniversary of the Society of Neuropathology (21-24 April 2016), which has also been published in a medical journal ("Neuropädiatrie in Klinik und Praxis", 03/ 2016).
Through these activities, we have increased the knowledge about the disease and thus the chances for early diagnosis and the best possible support and therapy in daily life and school.
Other members attended the anniversary of the German Ethics Council (22.06.16) and advanced training sessions on association law, tax and public relations so they can competently inform the NCL-families. Several journalists and television stations contacted us, were informed in detail about NCL and put in touch with NCL families. This resulted for example in two long articles in the well-respected newspapers “Zeit” and “Spiegel” and a television report about childhood dementia.
One of our members worked and still works with other European NCL associations and specialists in an ERASMUS financed project about the long term learning of children with juvenile NCL. The results shall help to better educate and communicate with NCL-children and teach caregivers and teachers about the special needs of the children with NCL. Several families participated in another study about the burden of the disease on the affected families. The results of this study were made public at the International conference on Neuronal Ceroid Lipofuscinoses.
Our Association Chair attended the 15th international conference on Neuronal Ceroid Lipofuscinoses in Boston (05. - 08. October 2016) to learn more about recent and ongoing research activities, to talk to scientists and doctors. And she used the opportunity to exchange experiences with the chairs and members of NCL-family associations from other countries.
Our association has organized two holiday camps, one from 20th March to 29th March 2016, the other one from from 10th July to 19th July 2016, each camp for 10 affected children and with lots of dedicated caregivers. The NCL-kids could feel and act like normal teens, teenagers or young adults during this free time, something which is rare in their normal daily life. The activities included for example cinema visits, shopping, swimming, a barbecue, bonfire, listening to and making music or the visit of a leisure park.
We organized one weekend seminar only for the fathers of NCL-children (Münster 10.–12.06.2016), another one only for the mothers (Bielefeld 06.-08.05.2016) and a third one only for the siblings (Hannover 08.–10.04.2016) - each seminar with competent speakers to different topics and enough time for the participants to talk and to share their thoughts and experiences in these special groups.
Again more than 120 members of our association met in Barsinghausen (9.-11. September 2016) at our annual meeting with experienced doctors and speakers. The siblings and children with NCL had their own program and were taken care of by our caregivers and supporters - one highlight was the visit of a fire brigade with several fire engines. The parents were free to join different workshops, attend talks given by scientists, medical and social law professionals, exchange experiences with other families and to talk face to face about the special needs of their children with experienced doctors from the NCL-advice center in Hamburg. We work closely together with this special hospital unit and quite regularly families go there with their NCL-children for medical examination and help.
Our four regional chapters arranged several more meetings according to the needs and wishes of the members in their region.
Several people and members helped to raise awareness and money for NCL and our association as we are financed to a great deal through donations. For example they organized a wonderful concert, sold books and handicrafts or organized exhibitions of paintings in hospitals and city halls. Of course all combined with information and information material about NCL.
Our experienced and dedicated long-time patron Prof. Dr. Kohlschütter was appointed honorary member of our association in accordance with the decision of the association members at the annual general meeting 2015. And last but not least our annual general meeting took place on September 11th 2016.