Your Voice, Your Connectionswww.shropshire-disability.net

General Meeting14th June 2012 2pmThe Trinity Centre

Meole Brace, ShrewsburyMinutes

1. Welcome from the Chair

Sonia Roberts welcomed around 40 people to the meeting. This was our first visit to The Trinity Centre for a General Meeting, and she hoped members would agree that it was a good venue. In response to feedback from the floor that it was a long walk to the hall even from the Church, we will aim to provide wheelchair assistance in future to those who have difficulty walking.

Sonia thanked Omega (Care for Life) for their generous sponsorship of this meeting, and for all the support they have given SDN in the past.

She thanked all members of the Steering Group for the support they have given her since she has been Chair of SDN.

2. Apologies

Ruby Hartshorn, who does a huge amount for SDN on the Steering Group, was unable to attend.

Margaret Barnes gave apologies for Glynn Jenkins and Phil Hughes.

18 others had sent apologies to the Secretary.

3. Minutes of General Meeting 8th March 2012

Copies of the Minutes of the Meeting on 8th March 2012 were adopted as a true record. Proposed by James Moraghen. Seconded by June Jones.

4. Matters Arising

There were none that are not covered later in the Agenda.

5. Steering Group Reports

TreasurerSonia gave a brief update on behalf of Ruby Hartshorn, who has taken over Treasurer’s duties in the short term until 1st September this year.

Ruby is currently engaged in the preparation of our Year End Accounts to 31st May 2012.

Our current Bank Balance is £9566.67 and we have outstanding invoices of £495.90 leaving £9070.77. Most of this balance is funding which is committed to specific projects or items of expenditure.

Volunteer time is amazing when you consider we have a Management Committee of 8 plus another 8 who work either support the Fund-raising Sub Group or work behind the scenes such as Web Work, Reading our newsletter Your Voice onto You Tube.

Volunteer hours are 5244, which at minimum wage rate is equivalent to £31,883.52. And even this is an undercount since we know that all hours have not been recorded.

Sonia invited members to apply for the post of Treasurer.

WebsiteOur website is currently being managed voluntarily by Paul Nash, in the limited time he has available. Val Lewis, who had been doing a great deal of work voluntarily in this area, has now taken up full time employment, and we are looking for someone to help Paul. Ian Warburton, who has IT experience, said he would think about it.

Sonia encouraged everyone to visit the site regularly. It continues to get a great response from Health and Care professionals, as well as our own member users.

NewsletterWe are providing Your Voice to a growing number of people without On-line access.

There will be no July edition of Your Voice. The August edition will contain all the news from July and August.

FundraisingRuby had sent a report.

The Three Men in a Bow-Tie evening raised £618.35. Sonia said it was a most enjoyable evening.

We took part in the See Hear Exhibition and enjoyed that. We plan to take part in the Shrewsbury Carnival this coming Saturday, and more volunteers to help will be welcome. We plan to run Training sessions to help volunteers to promote SDN at events.

Margaret Barnes appealed on behalf of Ruby for more volunteers to join the 5 people already on the Fundraising Subgroup.

Contact:-Ruby Hartshorn Tel: 01743 340832

Email: rbyhartshorn@yahoo.com

PublicityWe continue to get good press and radio coverage about our work on a regular basis. We have good links with Press contacts and local radio presenters.

We now have several village and parish magazines / newsletters who are putting details in their publications about SDN quarterly meetings and other news that is relevant to us. So our publicity has been taken outside the large towns.

This month we have a 2-page article in a glossy magazine that reaches over 20,000 people. We are taking up offers from 2 other publications to provide some editorial about SDN.

We do use Facebook to get messages out likewise our Twitter is used regularly and many people re-tweet our messages.

We are really pleased at SDN that we are finding & being offered new opportunities to spread the word about what we do.

We have bought several items to help with promotion 2 trolleys enabling us to transport all our literature to events Perspex literature display stands which are ideal to have at

Information Stands 2 sturdy SDN banners a 4ft lightweight fold-able table and a cloth to cover it

6. Charitable Status

Dave Hewetson explained that, because SDN annual income exceeded £5,000 last year, we are legally bound to register with the Charity Commission. We considered several options before applying to be registered as an Unincorporated Association with Trustees.

We submitted our application, along with copies of our Constitution and Financial Accounts, on 3rd May. After we sent a reminder on 31st May, the Charity Commission responded on 8th June to say our application would be successful, once some minor changes have been made to our Constitution. The suggested changes arei. To re-word our objects slightly, in a way that the law regards as

being exclusively charitable, as established by the courts over many years.

ii. To re-word our clause on disposal of assets in the event of dissolution, to make it clear that, on dissolution, the assets will be applied for charitable purposes only

We have accepted the re-wording suggested by the Charity Commission, and, in accordance with Clause 9 of our Constitution, will shortly call a Special General Meeting of members to approve the changes.

7. Disability Awareness Day 15th July

One of our Founder Geoff Forgie’s hopes was to organise a Disability Awareness Day in Shropshire, modelled on one in Warrington, which has been running annually for the past 20 years. The Warrington event has grown to the extent that, last year, it attracted 28,000 visitors, including several overseas delegations, on the day.

We are considering aiming for an inaugural Shropshire Disability Event in 2013, but in the meantime thought it might be inspirational for members to visit this year’s event in Warrington on 15th July. Tom Memery said he attended with Geoff last year, and thought it was amazing. Omega is organising a coach trip on the day for anyone who would like to attend. Telford & Wrekin Council have agreed to sponsor

an adapted vehicle for SDN members who are wheelchair users and would like to go. We are hoping Shropshire Council will sponsor a similar vehicle for members in the Shrewsbury area.

Have a look at www.disabilityawarenessday.org.uk, to get a flavour of this year’s event, and if you would like to go, please get in touch.

Contact ;Dave Hewetson Tel: 07972 254010

Email: davidhewetson@talktalk.net

8. Geoff Forgie Memorial Disability Challenge 16th September

Dave Hewetson gave some background to this event. Geoff Forgie had participated in the past in events run to raise funds to build MS Therapy Centres across England. Normally this would involve teams carrying a wheelchair passenger up Snowdon. Geoff wanted to run a similar event in Shropshire, and we thought it would be a fitting memorial to him, and help raise funds which we could use to help people with disability in Shropshire.

Earlier this week, we wrote to around 150 organisations, including the Armed Forces, the Services, Rugby, Football, Cricket and Hockey Clubs, all the large commercial employers in Shropshire, as well as local Young Farmers and Rotary Clubs, inviting them to submit one or more teams of 10 to take part in the Geoff Forgie Memorial Disability 16th September Challenge. The Challenge is to carry a wheelchair passenger on an 11km route up Cardingmill Valley to the highest point on the Long Mynd, and back via the Burway, taking in views like these.

We are hiring the specially made carrying frames from the MS Therapy Centre for the event.

A Team can nominate someone they know as the wheelchair passenger. But there will be opportunities for SDN members to volunteer as passengers also. (2 members have already volunteered).

We will provide sponsorship forms for individual team members to raise funds for SDN.

We will have a marquee serving refreshments on the day.

Ann Shaw of West Mercia Police asked Dave to copy her the invitation letter.

Contact ;Dave Hewetson Tel: 07972 254010

Email: davidhewetson@talktalk.net

9. Any Other Business

No items were raised.

10. Guest Speaker – Dave Hewetson“Rett Syndrome – An Amazing Story”

Dave has a granddaughter Clara who has Rett Syndrome, and has been fundraising for research into the condition for the past 5 years.

He started by saying that Rett Syndrome is very rare, but in the world of medical science, Rett Syndrome is massive, as Rett Syndrome research is opening up understanding of the brain, for researchers working on other neurological conditions.

He titled the talk “An Amazing Story”. He thinks that we’re on the way to a major achievement for the human race. Comparing it to a recent triumph for our species, the Chilean miners’ rescue, he said that, with Rett Syndrome, we’re at the stage where we’ve broken through to the miners, and the first miner is just about to begin the tricky ascent to the surface.

Clara is aged 8, and has a typical presentation of Rett Syndrome. She developed normally until about 15 months, when the symptoms first appeared. She lost all mobility, and developed no speech. She lost the use of her hands due to the repetitive hand movements that overtook her. BUTSince Clara’s diagnosis in 2006, major advances in research have shown that her brain is deactivated, not damaged.

Here are some other highlights from the talk:-

What is Rett Syndrome?

“Imagine the symptoms of autism, cerebral palsy, Parkinson's, epilepsy, and anxiety disorders…all in one little girl.”

“Now imagine these symptoms vanishing ... one by one” These are the messages on the home page of the Rett Syndrome Research Trust, whose sole aim is to find a cure and treatment for Rett Syndrome. (see www.rsrt.org or www.reverserett.org.uk in the UK)

• A Neurological Disorder• The most physically disabling of the autism spectrum disorders• It has a genetic source – a mutation in a single gene (MECP2) on the

x chromosome• Not hereditary - it’s an accident at conception• Girls only. If boys have the genetic mutation, they generally won’t

survive, because boys have only one copy of the x chromosome, whereas girls have 2 copies, and therefore a backup system

• Not degenerative. Science has shown that the brain cells are not damaged. They’re just inactive, because of the faulty gene

• No cure at the moment, although research has given us great hope for one

Typical symptoms• Regression (between 12 and 24 months) after apparently normal de-

velopment • No walking or speech• Hand-wringing• Epilepsy to a greater or lesser extent• Poor muscle development, which typically leads to scoliosis

(curvature of the spine), which often requires surgical correction• Breathing difficulties (either shallow or gulping) • Nutritional difficulties. A gastrostomy (tube into the tummy) can help

with feeding• Digestive difficulties such as reflux, or excessive wind• Good eye contact & communication• Totally dependent• Comparatively Happy

Incidence of Rett Syndrome•1 in 15,000 female births worldwide•2nd neurological disorder for girls behind Downs

• 30 times rarer than Downs• UK 2,000, US 10,000, Europe 30,000, World 200,000• Comparison

–Cerebral Palsy 1 in 500–Muscular Dystrophy 1 in 3,000–Cystic Fibrosis 1 in 2,500–Motor Neuron Disease 1 in 50,000

First Identification of Rett Syndrome• Prof. Andreas Rett• Austrian paediatrician• 1966 First paper on pattern of characteristics• 1983 First paper in English – Bengt Hagberg• No knowledge of cause• No genetic test• Poor diagnosis numbers• Diagnosis in late teens, or later, or never

Discovery of source gene• Prof. Adrian Bird at Edinburgh Univ.• Career scientist• 1990 discovered the MECP2 gene• methyl CpG binding protein 2• Resides on x chromosome• In all cells of body, including brain• Sort of master gene - needed for many brain functions to work• No link to Rett Syndrome at this stage• Therefore no impact on Rett families

The Woodcock FamilyThis family in the town of Union, Washington State, was remarkable (1 in 100 million chance) in that a number of family members all had a form of Rett Syndrome. Analysis of their blood samples allowed scientists to eliminate one-third of all genes, but it was still a needle in a haystack, since there are about 50,000 genes in the human genome.

Discovering which gene causes Rett• Huda Zhogbi, Baylor College Texas• First Rett patient 1983• Anomaly observed by non-Rett researcher• Mutation detection test on 6 patients• Extra band showed up• More patients tested• Verified by another lab• MECP2 was THE gene!• September 1999 Announced in Houston• Uncontrolled excitement• Genetic test made possible for the first time

Adrian Bird reverses Rett Syndrome • ”His” gene (i.e. the gene that he discovered in 1990) causes Rett

Syndrome• Rett family gets in touch with him

–“What are you going to do about it?”• 2000 - Shift in scientific focus from “blue sky” to specific research into Rett Syndrome• 2006 Mouse model reversal

–Built mice with MECP2 road-blocked either side–Rett Syndrome symptoms develop–Road-blocks removed with Tamoxifen–MECP2 restored mice to normal–Totally unexpected–Repeated the experiment, results even better

• Feb 2007 results published in the journal Science • Breaking news UK & worldwide• Implications for Rett Syndrome

–No longer incurable, so shift of focus towards research–But Clinical care is even more important. We need to keep the

girls healthy and ready to benefit from therapy–Brain cells not damaged, just inactive–Bird said he’d be disappointed if an effective therapy for humans

was not found within the next 10 years (i.e. by 2017)• Implications for autism, schizophrenia, Parkinsons. Previously accepted theory has had to be revised• The world is learning about the brain through Rett research

Research since 2007• Reversal repeated in other labs, verifying Bird’s results• Reversal in glia and neurons• Gene therapy (i.e. injection into the brain of a virus containing a

working version of the Mecp2 gene)–example of SMA (Spinal Muscular Atrophy), another disorder with

a single source gene, where gene therapy has been successful in the lab, and clinical trials (on humans) are planned for 2014/2015

• MECP2 reactivation through drugs – many labs working on this• Drug screening proved to be possible using a skin biopsy – this will be many times quicker than using generations of mice • Bone marrow transplants – in 2012, Rett Syndrome symptoms have been prevented in a mouse with a faulty gene, by transplanting bone marrow from a healthy mouse• There is a worldwide race to a cure•Clara’s supporters have raised over £22,000 since 2007 for research

11. Next Meeting

The next General Meeting will also be our AGM, and will be

Thursday 13th September 2012 2.30pm at Trinity Centre Meole Brace Shrewsbury

Guest Speakers – 1) Rachel Woods on Cooking for the Disabled,

(Rachel setting up a Community Interest Company for teaching the making of chutney and jam)

2) Rob Price – Talk on PIP’s (Personal Independence Payments)( Rob is the Team Leader for the Benefit Options Team at Shropshire Council)