The charity aims to support families, raise awareness, and enable research into the neurodegenerative disease. BDFA receive no statutory sources and only operate from the commitment of volunteers and fundraisers.
BDFA feels it is heavily important to have a holistic approach and to consider all needs of juveniles, their families and the professionals who work with them. Support and information for all involved, enables families to have the best quality of life.
Battens Disease sufferers have to endure a multitude of disabilities, such as; increasing visual impairment, resulting in blindness; complex epilepsy; speech decline; deterioration of motor skills, resulting in loss of mobility; ultimately, complete dependence.
Each year, diagnosis occurs in
- 1 – 3 infants
- 7 – 10 late – infantile children
- 3 – 4 juveniles
By staging these fundraising events, the BDFA hope to enlighten people to the devestation it causes to families, and how much we can help by giving just a little. Be it donations or time and effort.
The Four day route begins in London, covering an enduring 299 miles! Participants will begin by riding through our own beautiful English countryside to Dover. There, they will board the ferry to Calais. Once disembarked into France, The cyclists mount their bicycles and venture quiet French country lanes and traditional market towns through Northern France. Experiencing the greenery and rolling hills. Charity cyclists are known to receive cheers and praise by locals on their route as cycling is the nation’s favourite sport.
Although participants have trained arduously for this fundraiser, it is not a race and are encouraged to enjoy the scenery and terrain.
The finish line is a spectacular view of the 324 meter tall Eiffel Tower.
Off The Peg Design proudly sponsor Francis and this special fundraising event. We have the utmost respect for the parents, professionals and carers who support these children, who unfortunately have to suffer through this neurodegenerative disease.
If you would like to show your support too,
feel free to visit the fund raising page