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A Message from the founder of DWED Charity

Discussion in 'Eating disorders and diabetes' started by jacqfromdwed, Jul 8, 2016.

  1. jacqfromdwed

    jacqfromdwed Type 1 · DWED Support

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    Hi Guys my name is Jacq and I run DWED. Reading through this forum has made me realise that most of you don't really know too much about the charity, what it does, who we are, what support is available. So I wanted to let you know some good news and also update you on what has been going on at the charity.

    TREATMENT: I am currently recruiting for an online intervention for diabulimia. If you want more information please email my uni address j.allan@bbk.ac.uk and I will send you an info pack

    1) Diabetes UK: I had two sessions training people at Diabetes UK (with a focus on the helpline) last month, hopefully this will be really helpful going forward. I had very very similar issues with them when I first started the charity in 2008 but there have been some fairly fundamental changes there over the last year, in fact I spoke at their professionals conference in march and we're angling to get a bigger spot at the next one in Manchester. In particular their new type 1 lead is very sympathetic to the cause (and is also really nice). This has culminated in them updating their infomtion on Diabulimia which will be published next week, (I also authored the information) So it's taken a very long time but I do feel like the tide is changing their

    2) The Charity: We have a trustee Board of 10 including the worlds leading eating disorder expert Janet Treasure, and they all advocate for DWED in their day jobs but in terms of the day to day running it's mostly me. We are chronically under - resourced in fact at the moment just on running costs DWED is about 10 grand in the red (in otherwords I am about 10 grand in the red). So I do really really try to do my best but I have to make a lot of hard decisions about where time is best spent - mostly this is training healthcare professionals, feeding into the NHS (NICE, Healthwatch etc), speaking at conferences and doing the neseccary admin for a national charity. I should say at this point that DWED isn't my job, I am a full time phd student (researching diabulimia), lecturer and I work with those who have developmental difficulties and sexually harmful behaviour. In other words DWED is a true labour of love but it is incredibly difficult to balance it all, so if it takes me a while to get through my emails please forgive me, I will get there, it just wont be immediate. If you want to help we really really need fundraisers, we need people to donate 3 pounds a month (less than a large starbucks latte) we need people to help us with our social media campaigns and I am about to take on a social media coordinator (volunteer) so if you want to keep up to date please follow us on facebook and twitter. Next week is going to be massive, we are relaunching (new website, membership packs, news, future work) and making some big announcements.

    3) Facebook: There is a good group on facebook which is heavily moderated called Diabulimia Awareness, one of our Trustees is also an admin, I think what might have happened because we were quite strict about things like numbers and talking about weight loss, is that a number of splinter groups have popped up which aren't so heavily moderated or are moderated by people who don't have the experience to realise that they maybe harmful that I suppose is the problem with facebook though.

    4) Treatment: Ok so in terms of inpatient treatment I inputted heavily into the programme at the Maudsley/ Bethlem/ Institute of Psychiatry (part of which is being imported into my phd intervention) and we have had a good few patients come through the programme succesfully but it is now fairly oversubscribed. Also the EDEN unit in Aberdeen have been running a diabulimia programme for the last 5 or so years I think, the director is a good friend of mine and really knows her stuff in terms of Diabulimia. If you are in a situation where you feel your HCPs need training DWED will happily approach them. I have just contributed to a chapter in an acadmic text book with HCPs from the EDEN unit, once it's published I will start bashing HCPs over the head with it

    5) Diabetes.co.uk: So I am talking to the COO of D.co.uk about getting a dedicated section on this forum on Diabulimia to be moderated by DWED volunteers who have all been trained, this will be where we point all new members to which is pretty exciting.

    Ok so sorry about that massive entry but I thought you all might like to know. Like I said if you do want to get involved please interact with us on social media or reply here and if you want to take part in the treatment programme please email me j.allan@bbk.ac.uk
     
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  2. himtoo

    himtoo Type 1 · Moderator
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    Hi @jacqfromdwed

    a very warm welcome to you on the Diabetes.co.uk forum. :)

    I have moved your post to it's own thread in the Diabulimia sub forum to assist in hopefully reaching a wider audience on the forum.

    I am thrilled to see your first post here and hope this forum helps you in the support of people that have diabetes and eating disorders
     
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  3. Juicyj

    Juicyj Type 1 · Moderator
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    Hello @jacqfromdwed Welcome to the forum ;)

    Can I just say what an amazing job you are doing to help those in need, it's a selfless and valuable role in supporting those who are so desperately need help. I would be happy to contribute towards your charity so if you can advise further details - I will also email you. Thank you for joining us on here :)
     
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  4. Tanny35

    Tanny35 Type 1 · Well-Known Member

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    Hi @jacqfromdwed

    Welcome to the forum!

    I had never heard of this charity until I read this thread - and wow, it sounds like you are doing an amazing job running it.

    I'm sure you already have one set up, but if you don't - have you thought about a just giving page. People, if they want to can make a one off donation on this also. It is usually good for fund raising events and for sponsoring people. But you can , I believe have one set up in the back ground - you could put the link on here maybe and Facebook/Twitter, to enable peeps to make spontaneous donations!
    This is a great place to get the charity name out there though!
    A friend of mine set up a charity for PMP cancer - and I know how much time and effort she put in to it, so I agree with the comment above - you are doing an absolutely amazing job helping others in need :)


    Sent from my iPhone using DCUK Forum mobile app
     
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  5. Juicyj

    Juicyj Type 1 · Moderator
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    Hi Tanny - I have just found their Justgiving page by going onto the DWED website and set up a monthly DD, what would be a good idea is to do a fund raising activity which can be linked direct to the charity, I am keen just not sure what ;)
     
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  6. jacqfromdwed

    jacqfromdwed Type 1 · DWED Support

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    Thanks all we do have just giving and paypal giving we will be promoting all of this stuff fairly heavily next week with the launch of the new website
     
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  7. noblehead

    noblehead Type 1 · Guru
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    Hi Jacq and welcome to the forum :)

    You people at DWED do some fantastic work, long may it continue.
     
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  8. Tanny35

    Tanny35 Type 1 · Well-Known Member

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    I agree! We will all have to get our heads together to think of some good fund raising event ideas!


    Sent from my iPhone using DCUK Forum mobile app
     
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  9. catapillar

    catapillar Type 1 · Well-Known Member

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    Wow @jacqfromdwed it looks like DWED do some brilliant and much needed work! It would be such a good idea to have a proper collaberation between the forum and DWED - it could prove such a valuable way to supporting people taking there first steps to seeking help. I really look forward to supporting DWED.
     
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  10. NinaB73

    NinaB73 Type 1 · Well-Known Member

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    What amazing work you are doing! You must be exhausted!!
    I too had not heard of your charity and read with interest about the work you are doing. The forum is a great place to reach such a large diabetic community and a dedicated place on here can only help others to find much needed support should they need it.
    I wish you loads of success!
     
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  11. jacqfromdwed

    jacqfromdwed Type 1 · DWED Support

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    Thank you that means a lot. I have been speaking to the COO here (she actually approached me) so I'm hoping that this will be the way that me and my team deliver online support going forward - It is easier I think to keep everyone safe rather than on facebook where people can (rightfully I guess) do and say what ever they want outside the forum. The only thing I am concerned about is that people here seem to be posting a lot of weight loss/ gain numbers and that is a big no no as far as we're concerned.
     
  12. jacqfromdwed

    jacqfromdwed Type 1 · DWED Support

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    Thank you and yes I am constantly knackered ha ha. I'm hoping that moving my volunteers over here though will free up some time for me to focus on my phd, it is a constant balancing act but I'm lucky in that when you love what you do, it's not really work!
     
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  13. jacqfromdwed

    jacqfromdwed Type 1 · DWED Support

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    Thanks for this, yes the more fundraising the better - I could barely afford to print of the resources for the last conference I exhibited at so people got some really weird coloured leaflets ha ha.
     
  14. jacqfromdwed

    jacqfromdwed Type 1 · DWED Support

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    Thanks - I think we need to be a bit better at promoting ourselves, I just don't really like doing that it always feels a bit pushy and I think people have a bit of 'charity fatigue' if you know what I mean. I think that we will focus on the practical stuff that we are doing so people see it's not just 'give us money' it's here is what your money is supporting. This stuff will go live next week hopefully.
     
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  15. jacqfromdwed

    jacqfromdwed Type 1 · DWED Support

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    Ah you sent up a DD - Thank you SO MUCH, that's what we really need, sustainable income. Seriously I can't thank you enough x
     
  16. Mrsass

    Mrsass Type 1 · Well-Known Member

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    Hi @jacqfromdwed well done on the amazing work you do! I too had not heard of the charity.
    When I get a sec I will have a look on your website when it has been relaunched and will share on Facebook/Twitter etc
    Love the fundraising idea! :)



    Sent from my iPhone using DCUK Forum mobile app
     
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  17. KevinPotts

    KevinPotts Type 2 · Well-Known Member

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    Welcome to our community. Until,about 5 mins ago I new nothing s out the condition or your charity.

    You clearly and demonstrably "walk the extra mile" which is very inspiring. Our daughter doesn't have diabetis, but let's say she has a very difficult relationship, with food.

    I'm one of those forum members who has lost a tremendous amount of weight for health reasons, so I just wanted to encourage you with all you're doing, but it probably won't be wise for me to contribute further.

    It might be worth being aware that quite a lot of us have Signatures that automatically post at the footer of all our posts and that might cause you some concerns.


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  18. jacqfromdwed

    jacqfromdwed Type 1 · DWED Support

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    Hi Kevin

    Thanks I hadn't thought of that tbh, it's a tricky issue, I guess it's about the spirit in which the signature is meant, like we know that there are medical reasons for either type of Diabetics needing/ wanting to lose weight and also it can be inspiring to see those who do it healthily but at the same time I don't know how appropriate it is in a diabulimia forum. Minefield!!!
     
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