RACC-UK link added 20/09/17.
Is Sweet’s Syndrome UK a charity or non-profit organization?
No. Sweet’s Syndrome UK is not a charity or non-profit organization. It is a patient advocacy group (PAG) and does not request or accept donations or sell merchandise.
Is there a Sweet’s syndrome charity or non-profit organization in the UK or any other country?
No. For some reason, a growing number of people are of the belief that a Sweet’s syndrome charity or non-profit organization exists. There is no and has never been a Sweet’s syndrome charity or non-profit organization in the UK or any other country.
What should I do if someone tells me that they need donations or are selling merchandise for a Sweet’s syndrome charity or non-profit organization?
If someone tells you that they need donations or are selling merchandise for a Sweet’s syndrome charity or non-profit organization, they are lying.
Please do not give them:
- Any donations, e.g. money or goods.
- Your bank details.
- Money to fund or invest in their Sweet’s syndrome organization or an associated project.
Please do not buy:
- Merchandise, e.g. t-shirts, badges or wrist-bands.
Please do not believe them:
- If they insist that a Sweet’s syndrome charity or non-profit organization exists, even if you know them well or they seem very convincing.
- If they tell you that the person or group that has informed you that a charity or non-profit organization doesn’t exist is either mistaken or lying.
Please be careful:
- If they use some other cause or belief to try and convince you that they are genuine and caring, and just trying to help people with Sweet’s syndrome. For example, ‘I believe that helping those with Sweet’s syndrome is my Christian duty’.
- If they play on your sympathy. For example, ‘My little girl has Sweet’s syndrome and she’s suffering so much. Please give me some money so that I can continue to fund research into this terrible disease’.
- If they tell you that they simply want to help because they have Sweet’s syndrome or someone they know has Sweet’s syndrome.
If they persist in asking you for money, keep putting pressure on you to buy merchandise, or still insist that they are telling the truth and seem very convincing, please do:
- Ask for proof to back up their claims that a Sweet’s syndrome charity or non-profit organization exists. Also, thoroughly check out what they have told or shown you, even if at first glance the ‘proof’ seems genuine.
- Check that the charity or non-profit organization that they are running, working, selling or collecting for is officially registered, if it’s supposed to be.
If you have already given a donation or bought anything from them, please do not accept any excuses for their dishonest and criminal behaviour. For example:
- ‘You chose to give me money, I didn’t force you to give me money. That means it isn’t a con’.
- ‘I never said outright that the money was going to a non-profit. It’s not my fault that you got confused’.
- ‘If you buy a t-shirt and don’t bother to check first whether or not the money is going to a charity, then that’s your fault not mine! Everyone knows the buyer beware rule. You shouldn’t have assumed the money was going somewhere it wasn’t’.
- ‘What’s the problem? It’s entrepreneurial! Everyone has the right to earn a bit of cash’.
- ‘I’m sorry, but I was desperate. I need to pay my rent and utilities’.
- ‘Why are you trying to hurt me and make out I’m a bad person when I simply want to help people with Sweet’s syndrome?’
- ‘So what if the money isn’t going to a charity? Selling these hoodies is helping to spread awareness. That shows I’m a good person who just wants to help others’.
Finally, if any of the above should happen, please obtain as much information as you can and report the individual(s) or group involved to the relevant authorities.
Please do not:
- Ignore or ‘turn-a-blind-eye’ to what is happening.
- Make excuses for these individuals or groups.
- Assist these individuals or groups, or cover up what they are doing.
- Make excuses for anyone enabling these individuals or groups, e.g. make excuses for someone running a Sweet’s syndrome group who chooses to ‘turn-a-blind-eye’ or is actively helping these individuals or groups con others.
- Put pressure on others to forgive and excuse the behaviour of these individuals or groups. This will only encourage criminal behaviour, and make it easier for them to get away with it and do it again. When this does happen, it’s done for selfish reasons. For example, someone doesn’t want to deal with the fact that a person they know and trusted is conning or exploiting others, and they don’t want the existing status quo to be upset. Therefore, they’ll put pressure on others to forgive and excuse the behaviour so that the status quo is maintained, no major conflict or upheaval occurs, and so that they don’t have to accept reality, i.e. accept that a person they trusted is actually conning others.
- Try to shift responsibility for the criminal behaviour back to the victim, e.g. ‘It’s your fault. If you’d been more careful you wouldn’t have been conned’.
Remember, even if the motives of these individuals or groups seem genuine, they are intentionally trying to defraud and take advantage of other people. If you enable them, you might also find yourself in trouble, and potentially facing legal prosecution. This is charity fraud!
What can I do if I want to donate to a charity or non-profit organization that helps those with Sweet’s syndrome?
As already stated, there is no Sweet’s syndrome charity or non-profit organization, but if you want to help those with Sweet’s syndrome or other autoinflammatory conditions, you can donate to:
- Rare Autoinflammatory Conditions Community UK (RACC-UK).
- The Autoinflammatory Alliance (formerly known as The NOMID Alliance, and based in the US).
Sweet’s syndrome merchandise is being sold by Rhonda Wood Negard, Fat Dog Creatives, US.
Sweet’s syndrome and rare disease merchandise is being sold via the online retail company, Zazzle, by Rhonda Wood Negard, Fat Dog Creatives (est. Aug 2007), DuPont, Washington, US. Please do not confuse Fat Dog Creatives with Fat Dog Creative (est. Jan 2003), which is a marketing design agency owned by Dawn Blackburn, Moscow Mills, Missouri, US.
Some of you may be familiar with Rhonda as she was previously misdiagnosed with Sweet’s syndrome (Rhonda’s blog, Not So Sweet’s – currently removed). She also worked on the Sweet’s Syndrome Awareness Campaign.
The Sweet’s syndrome and rare disease merchandise that Rhonda is selling is not associated with Sweet’s Syndrome UK in any way. Neither is the merchandise associated with any other Sweet’s syndrome group or organization, or rare disease group or organization. The sale of this merchandise is for-profit only, and Rhonda did not previously state, but does now state on some, but not on all of the merchandise, that it is ‘Artwork for (the) rare skin disease, Sweet’s syndrome’ and that it was a project created ‘to give patients another way to promote awareness’. Please be aware of the fact that the money from the sale of the merchandise goes to Rhonda and Zazzle. It does not go to a charity or non-profit organization and does not benefit people with Sweet’s syndrome in any way, e.g. it is not used to run a charity, fund research, provide information or services.
I know that some people prefer to buy health awareness merchandise where the proceeds are going to a charity or non-profit organization. Therefore, you may wish to take into consideration that this merchandise is being sold for-profit, and not to directly help those with Sweet’s syndrome. However, I also know that some people are happy to buy for-profit health awareness merchandise, simply because they hope that it will help bring attention to a particular condition – Michelle Holder, Sweet’s Syndrome UK.
Keep safe & be fraud aware!
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