6 FIECONites cycled 200km Dunwich Dynamo cycle... overnight!
FIECONites Emily Allen, Lauren Gray, Indeg Sly, Owen Harrison, Guy Lacey and Andrew Laws cycled 200km overnight (yes, really!) on Saturday 16th July as part of the Dunwich Dynamo, starting in London on Saturday evening and arriving at some awful time on Sunday morning on Dunwich beach in Suffolk.
They are not quite sure whose idea it was, but they decided to seize their adventurous spirit as a great opportunity to raise a significant amount of money for some very special causes. At FIECON, we often help launch treatments which help patients with rare diseases. We decided to split any donations raised between four charities that support patients and/or families of patients living with some of these rare, debilitating diseases.
Please see below for the four charities we will split the funds between and a little more information on these rare, debilitating diseases that we are aiming to raise vital funds for:
1. FOP Friends. FOP (fibrodysplasia ossificans progressiva) is a very rare, genetic connective tissue disorder characterised by the abnormal development of bone in areas of the body where bone is not normally present, such as the ligaments, tendons, and skeletal muscles. This disorder causes the body’s skeletal muscles and soft connective tissues to undergo a metamorphosis, essentially a transformation into bone, progressively locking joints in place and making movement difficult or impossible. Please see here for the charity's website: fopfriends.com
2. Dravet Syndrome UK. Dravet syndrome is a rare form of intractable epilepsy characterised by frequent, prolonged seizures often triggered by high body temperature, developmental delay, speech impairment, problems with coordination and balance, sleep disturbances, and other health problems. It begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. Please see here for the charity's website: dravet.org.uk
3. Pompe Support Network. Pompe disease is a rare, inherited and often fatal disorder that disables the heart and skeletal muscles. Pompe disease is caused by the buildup of glycogen in the body's cells. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs their ability to function normally and often leads to heart failure. Please see here for the charity's website: pompe.uk
4. UKATPA (ATTR amyloidosis Patients Association). ATTR amyloidosis is the term for a group of rare diseases that ends up with accumulation of amyloid (a protein that is produced in your bone marrow). A build up of amyloid causes a plethora of health complications including: heart palpitations, oedema, fatigue, and even peripheral neuropathy. Please see here for the charity's website: ukatpa.org