We are appealing for more trustees to help in the management of the Fibroduck Foundation.

We particularly need trustees with experience in grant applications, fundraising and publicity.




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Email: fibroduckfoundation@gmail.com

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There are numerous ways you can get involved and help Fibroduck. Please visit this page to read all about the help we need here.

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Fundraising to pay for biomedical research towards test, cause and cure for fibromyalgia

DUCK30 £3 to 70070 OR DUCK05 £5 to 70070 OR DUCK10 £10 to 70070 OR DUCK20 to 70070

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Q&A about the study

There is a lot of work in this study on what the brain is doing. Do Professor Davies and the Sussex team think Fibromyalgia is a mental health condition?

Dr Jessica Eccles of the Brighton and Sussex Medical School (BSMS) at Sussex University tells us: "It is not our wish to promote or label ME or Fibromyalgia as psychiatric. They are neurological and rheumatological conditions which have brain-body interactions. This is why I am interested in them, both as a scientist and clinician. Up to now, they have been called by the controversial term: ‘medically unexplained illnesses.’ Our work is trying find explanations and better treatments.

“I am a psychiatrist, but I am also neuroscientist and a practicing clinician. I practice in immunopsychiatry - the overlap between mental and physical health in people with inflammation. Our study looks at brain-body interactions, for example, how the brain of a Fibro patient responds to inflammation, and what causes autonomic hyperactivity. I see lots of people in my clinic who have Fibromyalgia or have significant fatigue, and I want to find real, practical ways to help them.”

Who else is funding this research? It looks like a big project.

It is a big project! And very exciting. The main funders for the part of the project we are joining are Versus Arthritis, which used to be called Arthritis Research UK, and Action for ME. The study is also supported by the National Institute for Health Research (NIHR).

Other projects being run by this team that are relevant to the Fibro community are being funded by the AMS - the Academy of Medical Sciences and other charities.

Can I take part in this research?

The part of the research the Fibroduck Foundation is funding has already collected its data, so unfortunately no, it is not possible to take part in that. But, researcher Jessica Eccles of the BSMS research team tells us: “There are a number of other studies in this area, both planned and under way.

“At present, we need healthy family and friends of people with Fibromyalgia to act as controls for our studies, so we would love some volunteers for that.

“Coming up, we have a study into hypermobility which is not specific to Fibromyalgia, but people with Fibromyalgia would be suitable candidates because so many have hypermobility. This is funded by the Academy of Medical Sciences and will involve using a tilt table and brain scanning. If you would like to volunteer for this, contact us in the first instance at: J.eccles@bsms.ac.uk. The first step is a screening interview by telephone, and if you are a suitable candidate then it will involve a one-off visit to the University.

“We will also be running a study on POTS – Postural Orthostatic Tachycardia Syndrome – and how it might be linked to brain fog. This study is being funded by AMS and another

patient-run charity, Dysautonomia International. It will involve a tilt table, brain imaging and EEG (electroencephalogram) where small sensors are attached to the scalp to monitor brain activity.

“To volunteer for studies at the Brighton and Sussex Medical School, please email us in the first instance on the email address above. You can also follow our Twitter feed about the hypermobility studies @BendyBSMS.”

Do I get paid to take part?

There are strict ethics rules against participants being paid for taking part in studies. We are able to offer a Participation Payment of £35 to help with expenses (or you could choose to donate this to the University’s research fund). Other than that, you would need to cover your own travel and/or accommodation expenses.

You were going to fund another study when you announced Fibroduck as a charity. What happened to that? Why are you not funding the original study as you planned?

We supported a study through its initial phases, but it went silent in 2016, and it appeared to have been shelved indefinitely. In January 2018 we began to look for another study. All three Trustees have faced considerable personal challenges on top of our illnesses: we knew we were not making progress raising funds, and we needed to invest the funds raised rather than keep paying out for each year's accountancy fees, insurances, Just Giving membership, PO Box and all the other costs of running a charity. We didn't want the funds to dwindle waiting for the original study to wake up.

In the summer of 2018, we heard about the Sussex team's work. We approached the University and opened a dialogue. Around the time we agreed to offer them our funds, we got word that the original study had woken up, but it was too late.

We think the Sussex study is extremely strong; it has a high profile and a number of arms looking at a range of symptoms experienced by PWFM. Its findings will very likely impact patient treatment quickly. We think our funds can make a bigger and more immediate impact with the Sussex study than the original study.

Q&A about the charity

What will happen to Fibroduck now?

Fibroduck began as an awareness campaign in 2009 and became a charity in 2012. We've had some truly amazing supporters and fund-raisers who have helped us, and we ourselves have run events, raffles, auctions, street collections, supermarket bag-packs and race nights among many other things. We created a web site full of information and guidance for new patients. We've run message boards and now run a Facebook support group.

But, the work of running a charity is not inconsiderable. The three Trustees really have given this all we have to give. In recent weeks, our chair, Jamie Goodwin, has been diagnosed with

lung cancer, and must step back as she begins a long programme of treatment. So, we’ve decided that now is the right time to wind the charity up. We are following the HMRC/CC processes to do this and will formally close down the Fibroduck Foundation on 30th June 2019, at our year end.

But, I'm willing to be a Trustee?

We have called for new Trustees many times over the years and we’ve either not had any response, or had people volunteer who then (probably sensibly) withdrew when they saw the amount of work involved. At this point, none of the existing Trustees wishes to continue, and we don't have known and trusted people to hand the charity over to, so we will be closing it down.

Have you allocated all the funds?

We have made an initial donation of £18,000 to the University of Sussex, specifically for the Fibromyalgia study by the BSMS. There are costs associated with closing down a charity, so we have reserved some funds to do that. We don't know exactly how much we will need to spend on this. Whatever is left will be added to the initial donation and given to the Sussex University team, as they plan a number of studies going forward which will benefit the Fibromyalgia patient community and are in line with our charitable aims.

Will the Fibroduck name carry on? Can I still use it?

We purchased the Fibroduck trade mark using our own personal funds. It belongs, personally, to Jamie Goodwin. We think that if someone else wants to pick up the baton and raise funds for research, then they really need to come up with their own ideas. A fresh approach and a fresh name and logo will attract new support.

So, Fibroduck is going to retire and fly off to the big nest in the sky. Please do not make and/or sell Fibroducks from now on, or use Fibroduck for events or in promotional material, because we don’t want purchasers or donors to think the funds are coming to us. Funds raised in this way could potentially be considered as fraud.

We are a support group that you have been covering under your Public Liability Insurance. Will this continue?

Unfortunately, the PL policy will lapse with the charity. It’s not possible to insure a charity that no longer exists. It means that support groups currently covered by our PL policy will need to make alternative arrangements for cover by 30th June 2019. If you are a support group that has been insured by us up to now, we can provide a copy of our current insurance which (unavoidably) will have a renewal date of April 2020 because of the way insurance policies work, but our PL policy will lapse as from 30th June 2019.

I still want to fund-raise for this research! If you're closing the charity down, where should I send my donations?

We are talking to the Brighton and Sussex Medical School and the University of Sussex about whether donations can be made directly to their research fund. If you want to fund-raise for this project after June 30th, please email the Fibroduck email account (fibroduckfoundation@gmail.com) and we will let you know where to deposit your funds raised so that they can be used by the Sussex team.

HOWEVER, if you are fund raising, please note that you will not be covered by the Fibroduck Foundation public liability insurance after 30 June 2019 as the policy will lapse on that date when the charity is closed down. You will need to make your own inquiries to make sure you are covered by your own insurance, or that of any event in which you are participating, or that of the venue concerned.

Do you still have any duck-branded stock left to sell?

Yes! It’s in Trustee Heather’s loft and people are still welcome to buy it before June 30th. We will announce a fire sale, so that we get every scrap of value out of the stock and to the Sussex University research fund before we close down. If you are interested in buying duck branded items (T shirts, book marks, pin badges and tea towels), please email us on fibroduckfoundation@gmail.com.

What will happen to the websites: fibroduck.com and fibroduckfoundation.com?

We are currently paying for a server to host these, and once the charity is closed, there will be no means of funding the server, so the web sites will be taken down. If you want information from those sites, please make sure you have downloaded what you need by the end of June. We’re happy for people to use and pass on the documents and posters we created, but please always credit the Fibroduck Foundation. We might not exist as a charity anymore, but that was our original work and took time and effort to create and the charity should be credited.

What will happen to the Fibroduck page on Facebook and the Fibroduck Foundation Private Fibromyalgia Support Group? What about the Twitter account?

We will be closing the Facebook support group on 30th June. We will keep the Fibroduck charity page going on Facebook for the time being, because we will use it to post links to results and news from the BSMS study.

We will be closing the Twitter account, because there is nobody to run it. We are not looking for volunteers to run our social media accounts; they need to be closed down as part of closing the charity down. BSMS research team can be followed on Twitter @BendyBSMS

Where will I be able to see the results of the BSMS study that we raised funds for?

We are making arrangements for a mini web site under the Fibroduck name. It will literally be a couple of pages. On it, we will post news and links to results, updates, and information

from the BSMS project. If the BSMS research team have any resources that are of use to patients, we will aim to offer links to those, too.

Why are your accounts not up to date?

Because, owing to personal circumstances, we have been able to do very little with the charity other than keep it ticking over. We have carefully kept all our notes, correspondence and bank statements, and will be assembling the outstanding accounts in time for closure on 30 June.

What are the steps for closing the charity?

Information on charity closure, all the steps and documents, are available on gov.uk.