NEMO charity organising Community CarnivalMay 25th, 2011
Local resident Lizze has recently established the charity NEMO. The charity works with the families and suffers of the rare genetic disorder Incontinentia Pigmenti (IP) throughout the UK and internationally. Our aim is to promote and protect the physical and mental health of IP sufferers through the provision of financial assistance, education, and practical advice. We also provide or assist in the provision of facilities for these families for recreation and leisure time occupations including all aspects of the arts and we aim to advance the education of the general public and medical profession in all areas relating to Incontinentia Pigmenti (IP).
What is Incontinentia Pigmenti?
Incontinentia pigmenti also known as Bloch-Sulzberger disease is a rare genetic condition caused by a mutation in the NEMO gene located on the X chromosome. This alteration in the NEMO gene is usually fatal prenatally in males and therefore IP almost exclusively affects females only. In some cases the NEMO gene abnormality has been inherited from mother to daughter and is often undetected in the mother in other cases the NEMO gene is known to self mutate. Genetic testing is now available to confirm diagnosis of the condition and to establish if the abnormal NEMO gene is inherited.
Complications of IP include:
IP is characterised by skin lesions that are normally present at birth or develop throughout the first few weeks. Other complications are characterised by skin, eye, teeth and central nervous system abnormalities of these include; Delayed development, Infections of blistered skin, Mental retardation, Muscle spasticity, Paralysis, Seizures, Walking difficulties, Vision problems, Alopecia and hypodontia (a condition where teeth fail to develop).
Our aim in the coming year is to provide practical information and independent advice on the issues that most affect the lives of people with IP through the development of a sound website, to also include a question and answer forum to enable parents and suffers to relate to others in the same situation. We plan on increasing our fundraising campaign which will include the first leg of our mammoth sponsored walk from Bristol to Folkestone, a charity auction, a ghost hunt, a dutch auction and other fundraising events. We shall also continue with our telephone and internet campaign and will continue to promote IP through leaflet drops and door to door campaigns.
We also aim to raise awareness of IP throughout the medical profession by distributing information to Doctors and medical students. The rarity of IP often leads to misdiagnoses in the early stages which can lead to more severe complications of the condition. By raising awareness NEMO hopes new born babies can be diagnosed earlier and the symptoms can be stabilized before further mental and physical abnormalities occur. NEMO also supports the research into IP which is vital to the future health of IP sufferers and was essential in the discovery of the abnormality of the NEMO gene.
Our services are essential to the families and sufferers of IP and therefore due to our financial constraints we aim to develop a strategy to enable the charities core information activities to become self-sustaining. The progress of NEMO depends on the financial challenges ahead of us, however our team of volunteers, remain undaunted and will continue to improve and develop the charity with good heart, hard work and confidence.
NEMO Artists and Designers Gallery Shop
The NEMO Artists and Designers Gallery Shop situated next to the Prom Music Bar on Gloucester Road was a short term project running throughout March and was the first big project NEMO had undertaken. The project began using local Bristol artists and after a great success expanded to include art from international artists. Since closing the gallery NEMO has remained actively involved in selling art and are looking to expand their portfolio of artists. Please email NEMO if you are interested in buying or selling art.
Bristol Community Carnival May 30th 2011
NEMO will be hosting the Bristol Community Carnival at the Rose Green Centre, Whitehall, Bristol, BS5 on bank holiday Monday 30th May 2011. This is a multi-cultural diversity event that is family orientated which will be split into daytime and evening events.
The day time event is from 11-5pm and will be a fun packed day of stall holders, music, entertainers and food. Tickets to this event are £3 Adult £2 Children.
From 6-11pm there will be a sit down dinner, charity auction and fashion show. Tickets to this event are £15 and £25 VIP.
NEMO is also looking for stall holders, volunteers, entertainers and musicians who would like to partake in this fun event.
We are currently working on our website, if you would like any other information about NEMO or would like to volunteer in any of the up and coming projects please email firstname.lastname@example.orgTags: Carnival, Nemo Back to news