Charity Name Help

[Nellienou]

Hey,

My husband was diagnosed with a very serious but rare degenerative neurological condition 6 years ago. It was a complete shock and has rocked our family. He is now disabled and uses a wheelchair. His condition has a 1 in 3 chance of being terminal.

Now that the dust has settled my husband and I are in the process of setting up a charity to offer holidays, grants and respite for families affected by rare genetic conditions.

We are struggling hugely for a name though and so I am trying to do a bit of market research!

Current suggestions are:

The Sandcastle Fund
The Genie Holiday Fund
The Bucket & Spade Foundation.

However it has recently been suggested to me that In business you are advised to have a name that says exactly what you do so one of these might be better:

The Rare Genetic Disease Holiday Fund

The Rare Genetic Disease Bucket & Spade Fund

The Rare Genetic Disease (or Condition) Sandcastle Fund

Something that explains who are target audience are and what we can give them.

Any comments/feedback on this or indeed any other suggestions would be very welcome thanks so much!

 

[Nochexman]

My preference is "The Rare Genetic Disease Holiday Fund".

But your could trade as something like "Rare Treats".

 

[Nellienou]

Thanks Nochexman - I hadn't considered having an official name and a 'trading' name - good idea!

 

[Bob]

You may like to have a look here for inspiration. Similar objectives but a potentially different class of beneficiaries

 

[Nellienou]

Thanks for the link Bob

 

[billmccallum1957]

The name of the disease could be one way to go.

Your hubby's name is another route.

You can get some pointers here http://www.neural.org.uk/directory-of-organisations/national-organisations

 

[Nellienou]

Thank you, there is already a small charity for my husbands particular condition which we are very involved with. Their focus is to raise money for medical research, awareness and giving grants to those affected in other countries for medical bills.

We are hoping to do something different. We want to provide holidays, grants for holidays and respite/carers whilst on holiday for families affected by rare genetic conditions (not just my husbands condition). The criteria will be that the condition must be genetic and on the list of rare diseases.

Thanks for the suggestion of using my husbands name - this has already been suggested but unfortunately I don't think the Dave Foundation has a particularly good ring to it! Haha!!

 

[Psl]

I think The Dave Foundation is a great name.

It will get people asking "what is The Dave Foundation?" and give you the opportunity to explain your personal story and connect with people on a more personal level.

 

[Nellienou]

Haha! Really? Do you think it's credible? Just ran it past my husband and he told me I couldn't name a charity after him until he was dead - haha!

Perhaps the campaign slogan can be along the lines of

#everyoneknowsadave

“Everyone knows a Dave” – but did you know you are also quite likely to know someone with a rare genetic disease? Research has shown that 1 in 17 people in the UK will suffer from a rare disease at some point in their lives and 80% of these diseases have a genetic origin.

 

[Psl]

Haha! Really? Do you think it's credible? Just ran it past my husband and he told me I couldn't name a charity after him until he was dead - haha!

Perhaps the campaign slogan can be along the lines of

#everyoneknowsadave

“Everyone knows a Dave” – but did you know you are also quite likely to know someone with a rare genetic disease? Research has shown that 1 in 17 people in the UK will suffer from a rare disease at some point in their lives and 80% of these diseases have a genetic origin.

Yes. I think it's very credible and I do think it would work really well. And you are off to flying start with what you have written above.

The hardest part of raising money for any charity is getting the message across. So any angle to engage the public, has to be worth exploring.

 

[ethical PR]

Hello I work in charity marketing and PR so thought I would add in my two-pence worth.

Lots of charities founded by individuals or their families are named after the person who has become ill or sadly who dies from a condition such at The Eve Appeal or Winston's Wish, but others are named after what they do such as The Make a Wish Foundation or the Teenage Cancer Trust as they have a single purpose. Others have a generic name such as The Shooting Star Foundation - a children's hospice in South West London.

Initially I really like your idea of naming your charity after what you do

The Sandcastle Fund
The Genie Holiday Fund
The Bucket & Spade Foundation

However you say as well as holidays, you are planning to offer respite and grants so I think these names wouldn't work as the don't cover the range of services and support you will cover.

I too am not sure about The Dave Foundation. 'Everyone knows a Dave' - is already established as a urban phrase and would lead to brand confusion.

I think it's worth doing some thinking around this. The Media Trust offers free marketing and PR help through it's match making service and you might find a designer or brand agency who can help you think through these areas, once you have registered as a charity.

The Small Charities Coalition http://www.smallcharities.org.uk/ is also a great source of advice and support when you set up.

I wouldn't add the rare genetic conditions into the name as it makes it much too long and cumbersome. You can add in a strap line such as ' holidays, grants and respite care for the 1 in 17 people with rare diseases and their families'. Or something similar.

Good luck

Helen

 

[Nellienou]

Thanks ethical PR - sooooo helpful!!!

We are keen to get going but completely lack confidence in any of the names we have come up with to go for it!

In your experience then are charities named after someone a good idea? Does it impact on anything marketing wise? How searchable they are on google etc?

What is your view on the David Foundation With an appropriate tag line? I initially wasn't that keen but I like #everyoneknowsadave

To clarify the ethos behind the charity is family time/making memories/quality time so we will offer holidays in adapted accomodation (the ultimate ambition is to have some of our own), provide grants towards holidays, provide days out and in time make links with care agencies and respite near our chosen holiday destinations so that families can go on holiday together but also carers and other members of the family get a chance to relax and spend time together.

 

[ethical PR]

As I mentioned particularly in the past health charities did tend to get named after a founder or a loved one associated with the founder such as Leonard Cheshire, Anthony Nolan Trust etc,

However it's not so much about the name but the brand behind the name that gains you recognition.

If you are mainly focussing on holidays and don't have plans to diversify in the future then I would look at your earlier holiday related suggestions which will resonate with those who have holiday memories and the benefits those evoke.

I mentioned in my original reply that I didn't think you should look at the #everyoneknowsdave because it is already used as part of popular urban culture

http://www.urbandictionary.com/define.php?term=Dave

you also have the TV station Dave.

Lots of people already use the phrase on twitter https://twitter.com/search?q=everyoneknowsdave&src=typd

It's also a name that's already been taken by a design agency and clothing brands

http://everyoneknowsdave.co.uk/

http://www.ebay.co.uk/itm/Minion-De...e-Mens-Funny-T-Shirts-14-Colors-/161258758402

In other words it's also strongly associated and used as a comical phrase....not ideally how you would want your charity to be seen.

If you are going for a name either use the full name or the surname with an appropriate strapline.

Do remember to check whether they are already taken as a URL and on social media.

 

[ethical PR]

This is the best guide I know on charity branding and it's free

http://www.charitycomms.org.uk/articles/branding-inside-out-a-best-practice-guide

 

[Nellienou]

This is incredibly helpful thank you so much for your help. I am going to start working my way through the links you have forwarded me.

 

[Root 66 Woodshop]

TBH - I think EveryonesknowsaDave Foundation says exactly what you want...

Everyone does know a Dave - and as you've said yourself... not everyone knows someone with a rare genetic disorder...

The Dave Foundation as PSL says makes you wonder what you do... with the Tagline


Everyone does know a Dave - not everyone knows someone with a rare genetic disorder!

Gives a full meaning to the capture of who you want to take notice...

Ask yourself, who do you want to notice the Charity exactly? Surely it's everyone.... therefore "#everyoneknowsdave because it is already used as part of popular urban culture" gets people interested and wanting to know what the Charity is about... as etheical PR has said, it's already popular... so why not use the popularity?

And ethical PR... shame on you... I am proud of being a Dave and extremely proud that I have my own TV channel named after me....

Take Haunted Worlds for instance... we were called this 2 years before "Most Haunted" came along... yet some people use to mistake us for each other... annoyed me a lil bit, but hey ho.

 

[ethical PR]

Sorry have to disagree with you there Haunted - just because a term is popular (for comediac value, rather than in a positive way ) - doesn't mean a charity would benefit from pigging backing on it.

Also Everyone knows Dave - runs contrary to what the charity is trying to say - which is there is a lack of awareness of the fact that 1 in 17 might develop a rare disease.

And it's not everyone that you want to take notice of the charity - but primarily either those who have rare diseases and their families who could benefit from the support you provide and those who are most likely to fundraise/donate to your cause - those with rare conditions/their families/co-workers/communities etc. As well as wider messaging to the public about how common rare diseases are so that if they develop one, they know what support the charity offers.

The last thing you want as a health charity operating in an overcrowded market place is to create brand confusion and have to fight for space with established brands already occupying the same social media space.

 

[Root 66 Woodshop]

And it's not everyone that you want to take notice of the charity - but primarily either those who have rare diseases and their families who could benefit from the support you provide and those who are most likely to fund raise/donate to your cause - those with rare conditions/their families/co-workers/communities etc. As well as wider messaging to the public about how common rare diseases are so that if they develop one, they know what support the charity offers.

A wee bit contradictory sorry... one minute you're stating that it's not everyone they want to take notice - yet anyone can develop a disease, whether it be a rare disease or not... therefore you do want everyone to know about the charity...

Everyone is entitled to their own opinion - and from someone who has a skin disease and a heart disorder then I have to beg to differ... the more that people know and understand my illnesses the more the NHS will be better prepared for them - so if it was a charity that dealt with my illnesses then I'd expect them to shout from the roof tops to everyone about it.

those with rare conditions/their families/co-workers/communities etc = in my book... everyone.

 

[Root 66 Woodshop]

suggestions:

Family Memories Foundation

Memories

Memories Live Forever Foundation

House of Memories

Holiday Memories

 

[ethical PR]

A wee bit contradictory sorry... one minute you're stating that it's not everyone they want to take notice - yet anyone can develop a disease, whether it be a rare disease or not... therefore you do want everyone to know about the charity...

Everyone is entitled to their own opinion - and from someone who has a skin disease and a heart disorder then I have to beg to differ... the more that people know and understand my illnesses the more the NHS will be better prepared for them - so if it was a charity that dealt with my illnesses then I'd expect them to shout from the roof tops to everyone about it.

those with rare conditions/their families/co-workers/communities etc = in my book... everyone.

Hi HH

I appreciate as someone with specific health conditions you will have your own experiences and views, however in communications terms, what I said isn't contradictory.

Charities like anyone else who market themselves effectively will identify key target audiences within the wider public and stakeholders that they want to target with their messages and communications activity to make the most of their communications resources and budget.

Targeting 'everyone' simply wouldn't be an effective way to market a charity.

A key message for this charity - is that they offer holidays and respite to those with rare diseases and their families - so these people will be a key target audience

Research shows that those most likely to give to a health-related charitable cause/fundraise for them will be those that have the condition, friends, family and workmates - so they will also be a key target audience. These aren't everyone but a group close to those affected.

Alongside this, as I mentioned in my earlier post - the charity would want a secondary generic awareness raising message to a wider public audience.

This charity is intending to offer holidays and respite - it's function isn't about wider awareness raising - as the OP mentioned there is already a charity out there, that is doing this.

The way the NHS will be better prepared for treating rare conditions isn't by general awareness raising of 'everyone' but by better training, resources and knowledge sharing.

 

[Root 66 Woodshop]

Research shows that those most likely to give to a health-related charitable cause/fundraise for them will be those that have the condition, friends, family and workmates - so they will also be a key target audience. These aren't everyone but a group close to those affected.

Research - what research please?

I've done lots of charity events - I have no affiliation with any of them, nor at the time did I know anyone who used the charity itself or had the need to do so.

is that they offer holidays and respite to those with rare diseases and their families - so these people will be a key target audience

They're the key target audience to use their services/charity

 

[ethical PR]

HH - my focus on this thread is to try and help the OP based on my twenty years comms/marketing experience in the charity sector including heading up comms for national health charities.

I'm not trying to get into an argument with you. Just because you as an individual behave in a certain way, doesn't mean that the vast majority of the public do so. Charity research I have seen when working with international, health, children's and environmental charities shows otherwise. People are much more likely to fundraise for, or give to charities they have an affinity with.

Most charities don't share their fundraising communications or brand research with third parties as it's commercially sensitive.

However if you are interested in this area you can look at what's available (free and paid for) through Institute of Fundraising, IPSOS MORI, CAF, Charity Brand Index, etc

And here's one to get you started http://www.bristol.ac.uk/media-library/sites/cmpo/migrated/documents/jgsurvey.pdf which shows that people were motivated to give because of a personal connection.

Charities never have one key target audience they usually have 5 - 6 key groups that are then broken down into further sub groups for example beneficiaries, corporate funders, community funders, trusts and grants (funders), influencers - politicans, media, celebrities, staff and volunteers etc

 

[Root 66 Woodshop]

Who's said anything about an argument?

I've not - so why suggest that you're not trying to get into an argument...

I've given my personal opinion - whether you agree or not doesn't bother me at all...

All I've done, like you is give my opinion... quite clearly your opinion is far more superior than a mere mortal like myself...

At the end of the day... do you see a Tv channel called HELEN?

I think not... so ner!

Thy name speaketh for itselfeth... Mwuahaha!

 

[Psl]

I have nowhere near as much experience as Ethical PR in the charity sector, and the advice that has been given is very helpful. I do have some first hand experience at raising money for a charity and found it hard work but fun and rewarding.

Last year a pal of mine, who is a very prominent business man in Manchester, wanted to do something for a charity. After looking around he chose one that did actual research into medicines for children with cancer, that didn't have the same adverse effect as current medicines had on the children - he couldn't have picked a more emotive cause.

He asked for help, which he got, and for a while we struggled to come up with a strategy to raise money. A strategy that was fun, but also engaged the children and adults, but one which also enabled us to get the message across.

In the end we settled for 'odd shoe day' - wear odd shoes to work etc and donate a quid. The charity thought it was a great idea as we would cover the cost of all social media and marketing etc. But it just didn't have that 'ring to it' - so we called it 'shoecember', mainly because it was mid Nov when we started and didn't want to wait and lose time.

It didn't go as well as we thought, but this year will be much better as we are more organised and have more time.

My points are;

When we went out socialising we got asked "Why are you wearing odd shoes?" and we relied "It's Shoecember" - "What is Shoecember?", at this point we could explain about the research into medicines for children that would have a less adverse effect than the current medicines available and get them to engage with the social media and justgiving page.
This is why I like the name 'The Dave Foundation' as it gets people asking "What is The Dave Foundation?" - and you can tell them.

I like the idea that 'Dave' has an 'urban' listing/following and a TV channel - why not ride off the back of them?

On a serious subject as rare genetic diseases, it may be worth a thought to inject some light humour into the promotion of the charity and what the charity does/provides?

My last point is, don't waste too much time thinking of names etc, launch it with a basic plan and tweak it as you go.

Hopefully more members, with more experience in this sector will chip in.

Good luck

 

[Nellienou]

Thanks for the feedback everyone it's really helped focused our minds. We have had our constitution drawn up for a while now and are very clear in what we want to do but have really struggled on the name front. Although we don't love it we are strongly leaning towards The Sandcastle Fund now with an appropriate tag line...

We haven't shelved the #everyoneknowsadave idea completely but my current thinking is to park it for the moment and pick a less controversial name (people seem to either love or hate the everyone knows a Dave idea) so that we can get up and running with a registered charity number and get on with what we want to do. We might then at a later date try and get some marketing advice (thank you ethical PR for your helpful links on this) and perhaps use the #everyoneknowsadave as a campaign slogan along with my husbands story (in his late 20s, out of the blue loses mobility and now disabled - everyone knows a Dave, it could happen to you or someone you know, despite rare genetic diseases being rare, collectively they affect a large number of people - that sort of thing)

You are right in that the aim isn't really to raise awareness, there are many small individual charities in relation to rare genetic diseases trying to raise awareness/fund medical research and there is the large umbrella charity genetic disorders uk (think jeans for genes day). However, in my opinion even with the best will in the world these small charities are not going to raise enough money to fund extensive medical research and the drug companies are not willing to fund the research and so we want to focus our fundraising efforts to try and make life a bit brighter for these families.

Thanks again for al the name suggestions!

 

[Nellienou]

Psl - shoecember sounds like fun!!

Thanks for the advice about getting on with it and tweaking it later - that's definitely where we are at now. I think we have spent so long thinking about the name we are totally fed up debating it now an just want to get on with it!

 

[ethical PR]

@Psl you're right - for certain charities humour can work well such as Movember - because it appeals to the target audience and works in terms of the charity's brand. They also got lots of pro bono support from celebs and corporates and media link ups to push the campaign.

For charities such as NSPCC - it would be totally inappropriate.

It all comes down to the values and beliefs of the charity and the audience/s it wants to engage.

The reason I thought everyoneknowsDave wouldn't work for the OP, isn't because of the humour, but because

• it's already commonly used in urban culture and social media
• there is another company already using it
• the hashtag is already widely used so any campaign or messaging the OP tried to use would get lost

I like the idea of using the Sandcastle Fund - as you have an association that works with building dreams and happy holiday memories and will have appeal across communities.

Best of luck @Nellienou to you and your husband.

Helen

 

[Psl]

Psl - shoecember sounds like fun!!

Thanks for the advice about getting on with it and tweaking it later - that's definitely where we are at now. I think we have spent so long thinking about the name we are totally fed up debating it now an just want to get on with it!

Good luck with everything and it's been a pleasure having some input.

Once you are up and running let us know the details, url, social media etc and I would be more than happy to promote them via my social media accounts.

All the very best to you and Dave.

 

[Psl]

@Psl you're right - for certain charities humour can work well such as Movember - because it appeals to the target audience and works in terms of the charity's brand. They also got lots of pro bono support from celebs and corporates and media link ups to push the campaign.

For charities such as NSPCC - it would be totally inappropriate.

It all comes down to the values and beliefs of the charity and the audience/s it wants to engage.

The reason I thought everyoneknowsDave wouldn't work for the OP, isn't because of the humour, but because

• it's already commonly used in urban culture and social media
• there is another company already using it
• the hashtag is already widely used so any campaign or messaging the OP tried to use would get lost

I like the idea of using the Sandcastle Fund - as you have an association that works with building dreams and happy holiday memories and will have appeal across communities.

Best of luck @Nellienou to you and your husband.

Helen

Great advice Helen and I have learnt a few things from the links you posted.

 

[Nellienou]

Will do psl!

Thanks again all

xx

 

[Nellienou]

Right, final question - I promise!!

We are pretty much settled on the Sandcastle Fund now and I am itching to send off the paperwork and get on with it but my husband is very keen on the Sandcastle Trust (or secondly, The Sandcastle Foundation) and much prefers this to 'Fund'. I agree with him but assumed we would not be able to use this as my understanding is that a charitable trust is a type of charity that gives away money to other charities to meet its charitable objectives. However, today he pointed out that we have the charity The Childrens Trust very near us and they offer all types of services since then I have thought of others as well (Dogs Trust etc)....

Anyone have an opinion/knowledge on this?

Thanks all x

 

[Bob]

There was previously a Sandcastle Trust registered at the Charity Commission but it has now been removed as ceased to exist so not a problem. Not aware of any restrictions on name but CC will review and comment on your application for registration

 

[Nellienou]

Thanks Bob - urgh so annoying I didn't think to include removed charities when checking the list. Can't find any definitive answers as to whether it will be a problem for the charity commission - hope not!

 

[Bob]

Shouldn't be a problem as been removed for some time ☺

 

[Nochexman]

My preference is "The Rare Genetic Disease Holiday Fund".

But your could trade as something like "Rare Treats".

Hey Nellienou, have you decided what you are going to do?

 

[Nellienou]

**UPDATE**

Hi all,
Still a way to go but wanted to update everyone that offered us so much help with the name saga. Finally settled on The Sandcastle Trust.

Our application is with the charity commission, we have a bank account, a logo and several local fairs booked up to Christmas which we are frantically baking/jam making for as our initial fundraising attempts.

I have an endless list of jobs that include choosing between just giving/virgin money giving etc, looking for grants and badgering everyone I know to run a marathon or jump out of a plane but my husband and I are really excited to be finally getting it off the ground and everyone involved is anxious to now raise some money and get on with helping the families we set out to.

Thanks again for everyone that offered help with the name choice.

I've tried to post a link to our website holding page and our Facebook page but the site won't let me. Please look 'The Sandcastle Trust' up on Facebook and give us a like!!

 

[Communication Specialists]

Hey there, I run a network for people with Scoliosis and over the years have built a great reputation for this, my name does not have the word "Scoliosis" in it. You become your name whatever you choose, people remember you not particularly the name

Scoliosis is a curvature of the spine is our name is "how to look good twisted", in a cluttered market, you may find it useful to have the condition within the name but as this charity is stemmed from a personal journey I would include your personality within the charity's focus

Simone

 

[Communication Specialists]

Congratulations with the name and good luck on your journey - have you considered gofundme for this task. I just raised over 6000 pound to move my mother whi had brain cancer (she sadly passed last week) to Spain for her final days, as this was her dying wish

It is a thought for your upcoming requirements

Simone

 

[Nellienou]

Simone - how to look good twisted is an amazing name!

I'm very sorry for your loss and thank you for the gofundme recommendation. We were waiting for our registered charity number to come through and then we were going to launch a crowdfunding campaign. I hadn't considered gofundme but I will give it a look. Well done on raising £6000 that's a wonderful achievement!

 

[Communication Specialists]

Thanks, I don't like things so serious, I know we all have health issues but we can bring the lighter side of life to such things and as we all have a twisted spine I went with that and the members love it too

I do wish you well for your charity and pleased you have gone ahead with it, I know you will receive great comfort in that over the coming months

Thanks for your kindness regarding my Mum, it is very sad

Simone x