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Shine Adult Members Council (SAMC)

Shine to widen stakeholder engagement and representation.
 
Following consultation with the Shine Adult Members Council [SAMC] at their April 2016 meeting and agreement by the Shine Board at their September 2016 meeting, Shine is to widen its stakeholder engagement and representation.
 
This new move does mean that the SAMC has now met for the last time and Shine would sincerely like to thank all past and present SAMC members for their commitment and many contributions over the years towards informing Shine's work.
 
Shine's new approach will provide more opportunities to more members, families and professionals to advise on the development of Shines services, resources, respond to Government consultations on key issues such as health or welfare reform, and share their views to shape Shine's priorities for the future.
 
Wider stakeholder engagement is developing through online surveys, Facebook groups, email groups, focus groups, meeting with health professionals and others, Shine events, Support groups and direct contact with members. 
 
Shine's new reach to key stakeholders will include members of all ages, families, supporters, funders and fundraisers, corporates and professionals.
 
Shine will be developing systems to record all stakeholder engagement and their views.
 
Further information about how you can get involved to follow ...  
 

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Did You Know?

Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Hydrocephalus can be congenital or acquired.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously!

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected!

Shunt: a device that diverts accumulated cerebro-spinal fluid around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: 
fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and seizures.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance...

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.

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