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    Membership of the ADSHG is open to anyone with Addison's or other forms of adrenal insufficiency that result in steroid dependence, family members, friends or anyone with an interest adrenal medicine.

     

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Addison’s disease (hypoadrenalism or adrenal insufficiency) is a rare condition where the adrenal glands cease to function and replacement medication is required.

    ADSHG

    At the Special General Meeting of the Addison’s Disease Self-Help Group (ADSHG) held on Sunday 18th November 2018, the resolution set before the meeting to convert to Charitable Incorporated Organisation (CIO) status was carried.

    The meeting was quorate with over 40 people present, including some partners and family members. The meeting commenced at 18:15.

    1.    The meeting started with a welcome from the Vice-Chair, Amanda Colman. 

    2.    Amanda Colman introduced the Trustees in attendance and the charity’s new Chief Executive.

    3.    The Treasurer, Paul Macnamara, outlined the context to the statutory Charitable Incorporated Organisation (CIO) process, set out the resolution and its benefits to our charity. The online votes made by members who could not attend the meeting in person were noted.

    4.    There was a period for free discussion and questions & answers, chaired by the Treasurer.

    5.    The meeting was asked to consider the following resolution :

    “The Trustees and members resolve that, in accordance with clause V of the current ADSHG Constitution, ADSHG shall transfer its activities and assets to the new CIO, following which the original charity shall be dissolved and removed from the Register of Charities.”

    On a show of hands, the resolution was carried unanimously. Proxy votes included 94% votes for and 6% votes against. 

    6.    As the resolution has been approved by members, the Vice-Chair on behalf of the Board of Trustees instructed the Treasurer and Chief Executive to make the necessary arrangements (and inform our regulator, the Charity Commission) to implement the resolution, effective 1st January 2019.  

    7.    The meeting closed at 18:40 with an opportunity for informal discussions ahead of the medical seminar by Professor Eystein Husebye.

    After the formal SGM, Professor Eystein Husebye of Haukeland University Hospital (Bergen, Norway) gave an informative, interactive talk on his recent clinical research work concerning adrenal insufficiency.

    Note : following the SGM, the Trustees met briefly to simply to note the result of the SGM and to confirm plans to put the members’ decision into action, aiming to complete the transition for ADSHG to the new CIO at year-end 2018.

    ADSHG

    We’re proud to have been selected as a charity partner of the London Landmarks Half Marathon on Sunday 29th March 2019. We have 8 places available for people willing to run and fundraise for Addison’s Disease Self-Help Group. Do you fancy taking part? Know a friend, family member or neighbour who’s quick on their feet? Well, this could be right up their street!

    The half marathon starts on Pall Mall and winds its way around some of the most iconic sights of the capital. All the roads will be closed as over 13,000 runners pound their way around a course that takes in St Paul’s Cathedral, Bank of England, The Gherkin, Tower of London and back along the Embankment past the London Eye to the finish line outside Downing Street.
     
    If you are (or know) a runner that would like to fundraise for us, signup here.
     
    Every Addison’s runner will get free entry to the race, an ADSHG T-Shirt plus a box of ADSHG fundraising swag. For the fastest overall time in our team, we’ll also be awarding a special prize – one for ladies and one for men. And there’ll be an extra special prize for the person who raises the most money for our charity by the end of April.
     
    So, what are you waiting for? Get involved!
     
    It’s going to be an amazing day – and everyone can get involved! And you don’t have to be able to run, to help….
     
    We’ll be assembling a group of ADSHG supporters to cheer on our team, raise awareness with spectators and raise some funds on the day. So if you fancy a day out to cheer on our team & make some new friends just come along – we’d love to see you there! Just save the date - Sunday 29th March 2019 in Central London.


    _nmcclements

    Last week, volunteers from Addison's Disease Self-Help Group headed to Birmingham, to the British Society for Paediatric Endocrinology & Diabetes (BSPED) annual conference.  Our aim in attended was to raise awareness of Addison's Disease amongst the medical fraternity and to participate in related symposium discussions. 

    -small-bsped-logo-banner_mauve.png

    The BSPED aims to improve the care of children and young people with endocrine disorders and diabetes mellitus by bringing together professionals from a range of disciplines. The conference in Birmingham brings together clinicians from all over the United Kingdom to share ideas and develop best practice.
     
    Our team of volunteers - Sue Rookes, Sue Partridge & Hilary Close were assisted by ADSHG's CEO, Neil McClements. We ran a display stand for 2 days of the conference. There were many useful discussions with consultants and nurses involved in caring for children & young adults with Addison's. Many medics confessed that they had yet to see a case of Addison's in their own clinics. Several consultants were grateful for our supply of materials for their clinics - both for patients and as training aids for their junior doctors.
     
    We also enjoyed participating in the symposiums, putting the patient's voice across to a medical community who were keen to listen to our perspective. On the final day of the conference, our CEO met with members of the BSPED Executive Committee to explore our shared mission in helping people affected by Addison's. Following this successful introduction, we hope over the coming year to work together with BSPED members to help them with their medical research and to provide expert patient feedback to endocrinologists working in this area.
     
    Thanks to Sue, Sue & Hilary, everyone left the stand with a bundle of our literature, leaflets, posters and other educational materials to take home and spread the word.
     
    Our thanks to our three amazing volunteers - Sue, Sue and Hilary - and also to BSPED's Executive Committee for facilitating our attendance and providing the stand, at what was a very successful event.



    ADSHG

    The autumn edition of the ADSHG newsletter is now available in the Publication centre and  members can download it here...

    This new-look issue is, as always, packed full with news on medication, ambulance awareness, members' experiences, fundraising events and social meetings. With Christmas fast approaching, there is also timely advice on how to reduce psychological stress.
     
    This issue of the newsletter also contains the 2018 Christmas catalogue order form, highlighting items and special offers available to purchase from our online Shop.
     
    Download the September 2018 issue of the ADSHG newsletter and the Christmas catalogue order form here.
     
    We would love to hear your feedback and views on the new look newsletter via the forum topic & poll here...

    ADSHG

    Membership of Addison's Ireland is open to anyone in Northern or Southern Ireland with Addison's or other forms of adrenal insufficiency that result in steroid dependence. Family members, friends or anyone with an interest in adrenal medicine are also welcome. You can join as an e-member receiving your material electronically through the website or as a postal member.

    Aims of the Addison's Ireland
    Addison's Ireland focuses on health-related issues specific to the Republic of Ireland, where the health services and other state supports differ from the UK, and aims to encourage greater medical awareness of our needs within the Irish health care system and supported by the Addison's Ireland Clinical Advisory Panel (AICAP).
     
    Joining Addison's Ireland
    Please join the ADSHG in the usual way and those based in the Northern or Southern Ireland,will automatically become a member of Addison's Ireland too. You can join at any time of year and will receive contact details for the Addison's Ireland Co-ordinator Rachel Bracken when you join the ADSHG.
     
     
    Join the ADSHG.

    ADSHG

    The Scottish Medicines Consortium has approved Alkindi (hydrocortisone granules in capsule form) for restricted use in NHS Scotland. Following a submission by ADSHG, the SMC said "We would like to thank you for the time and effort taken to produce your submission. Capturing the views and experiences of patients and carers is an important part of the SMC process and plays a key role in helping our Committee reach its decisions."

    The SMC has accepted hydrocortisone granules for restricted use for the replacement therapy of adrenal insufficiency. This acceptance is limited to use in infants and young children aged from birth to less than six years old, where the only options to get the right dose are to break up and crush hydrocortisone tablets, produce special solutions or to use hydrocortisone buccal tablets (that dissolve when held between the gum and the cheek) that are not licensed (approved) for treating adrenal insufficiency.
     
    The SMC have published the explanation for their decision, which is available for download from our website here : Decision explained hydrocortisone final.pdf.
     
    Further details are available here : https://www.scottishmedicines.org.uk/medicines-advice/hydrocortisone-alkindi-fullsub-smc2088/
     

    ADSHG

    Everyone with Addison's – or steroid-dependence from any cause – should be prescribed an emergency injection kit in case of adrenal crisis. Within the UK, these are usually prescribed by the GP, although some specialist hospital centres issue both injection kits and prescription injection drugs to their adrenal patients.

    Hydrocortisone injection drugs are only available via prescription from your doctor. They are prescribed as either:
    Hydrocortisone sodium phosphate 100mg (liquid hydrocortisone in a 1ml ampoule) Hydrocortisone sodium succinate 100mg (powdered Solu-Cortef plus 2ml water vial)
    It is advisable to request a prescription for 3 - 5 vials injectable hydrocortisone in case of breakages. You will also need intramuscular needles (blue, IM) and 2mL syringes; alternatively, safety syringes are available from our online shop. Please note, these drugs do have a shelf life and it is important you regularly check the 'best before' date on any medication provided. If this date is due to pass, you can request a new prescription from your doctor for this medication.

    Note that hydrocortisone acetate (Cortistab) suspension must be avoided for use in cases of adrenal crisis. It has a delayed onset so is ineffective for emergency treatment.
     
    Emergency injections: tips and reminders
     
     
    Sources:
    Managing your Addison's
    Caring for the Addison's patient: information for GPs.
     
    ADSHG emergency injection kits are available from our online shop
     
    A range of emergency injection kits for both adults and children is available from our online shop and comprise:
    Sturdy plastic boxes containing safety syringes, amp snaps and photo instructions Available in adult and neonate (paediatric) sizes Do not contain prescription injection drugs, which must be prescribed by your GP or endocrinologist.
    You can purchase emergency injection kits (minus the drug preparations) from our online shop.
     
     
    ADSHG adult emergency injection kit - large case

    ADSHG

    Autumn is here already and it’s time to stock up on Christmas cards and awareness goods ahead of the Christmas season. Special offers this year include the alpaca beanie hat, baseball cap as well as special offer combination packs of the cotton shopper, plastic pen and sticky notes.

    For 2018, the ADSHG has our fabulous Christmas awareness gift, the Addison’s cookery book compiled by our late Trustee Sue Chambers. Not only a lasting legacy from Sue, but packed full of delicious recipes that have attracted many positive reviews.
     
    Special offers are available on some awareness goods this year:
    a soft, warm beanie hat in alpaca wool, with a nylon mix for durability, in ADSHG logo colours. a quality cotton baseball cap with embroidered logo at front, web address at back and long visor combination pack of Cotton shopper + Plastic ball pen + Sticky notes + Trolley token key ring combination pack of Cotton shopper + Plastic ball pen + Sticky notes
    double up with the two pack version of the Christmas greetings gift wrap  
    There is a fixed post and packing charge per order which is £4.45 for UK orders, £9.75 for the EU and Ireland, and £12.95 for the rest of world. So the more you order the better!
     
    Visit our online shop at www.addisons.org.uk/shop
     
    Happy shopping!

    ADSHG

    The ADSHG is holding a Special General Meeting (SGM) on Sunday 18th November, covering our move to Charitable Incorporated Organisation (CIO) status and to vote in a new constitution. It will be followed by a Q&A session by Professor Eystein Husebye, head of the Department of Endocrinology at the University of Bergen. Tickets are available in the online Shop.

    Notice of Special General Meeting
    The notice of meeting can be found in the separate Notice of Special General Meeting article on the website.
     
    Why are we having an SGM?
    The primary purpose of the SGM is to allow our members to vote on moving ADSHG to Charitable Incorporated Organisation (CIO) status and to vote in a new constitution.
     
    Why do we want to move to CIO status?
    As our charity grows and seeks to provide support to more and more people in the Addison’s community, we have determined that ADSHG and therefore our members will benefit from us moving to CIO status. This means that we continue to be registered with the Charity Commission. We will continue to have a registered charity  number, allowing us to fundraise and providing the public with confidence that the charity is appropriately regulated.
     
    Why a new constitution?
    The constitution is effectively the ‘rule book’ of our charity and ensures ADSHG is run properly for the benefit of the members. Our current one is nearly ten years old and is no longer in line with Charities Commission best practice, hence we need to update it.
     
    Where and when?
    The SGM will begin at 6pm on Sunday 18th November 2018 at the Premier Inn, George Square, Glasgow. Details are in the members’ calendar and seat reservations are available through the ADSHG online Shop here...
     
    Online vote
    If you would like to vote on the new constitution and our CIO status, but can’t attend in person in Glasgow, a link will be sent out in an alert. In the meantime, you can see the new proposed new ADSHG constitution here...
     
    What is the medical seminar about?
    Following the SGM, Professor Eystein Husebye from Bergen, Norway, will provide a presentation on recent information of interest to the Addison’s community after which he will take questions. Eystein Husebye is Professor and Head of the Dept. of Endocrinology at the University of Bergen and Haukeland University Hospital, in Norway. He did a PhD and specialized training in internal medicine and endocrinology at Uppsala University Hospital in Sweden. Professor Husebye was the lead coordinator for the EU-funded EURADRENAL consortium bringing together endocrinologists across 12 European centres from 2008-2012 to perform clinically relevant research in Addison’s disease. He is the president of the Norwegian Endocrine Society and has published more than 150 papers, mainly about Addison’s disease. Professor Husebye is providing a keynote address to the British Endocrine Society conference the following day.

    ADSHG

    Join Invicta for their first concert of Music for Advent and Christmas. The concert is in support of the Addison's Disease Self-Help Group and will feature traditional Christmas carols alongside some stunning choral works for the Advent season.

    The concert will be followed by mulled wine and a mince pie - included in the ticket price. To order tickets online click here...
     

     
    To order tickets online click here...

About us

The Addison’s Disease Self-Help Group is the support group for people with Addison’s disease or adrenal insufficiency and their families in the UK and Ireland.The group was formed in 1984 and is a UK registered charity no. 1106791.

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