We need funds to organize and to conduct vacations for kids with "Batten diseases" (NCL). These kids have special needs and they shall enjoy carefree vacations as every healthy person. In addition the parents of these kids shall have a free time to recover from the daily mental stress. We need mental help and also money to be able to organize the holidays for our kids, which are in total usually 10 days incorporating a specialized caretaker team.
Batten disease is a fatal disorder of the nervous system that typically begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 to 10 years. The kids suffer from mental impairment, becoming blind step by step, the loss of motor skills and they have frequently epileptic shocks. The disease is up to now impossible to cure and is fatal by the late teens or twenties.
The "NCL-Gruppe Deutschland" (NCL-Group Germany) is a parent-support organization representing the interests of children and families affected by Batten diseases (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. Currently, it consists of about 380 registered members. The Board consists of 8 members, all working voluntarily. In addition, 5 regional groups (North, West, East, South and 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 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.