I am very fortunate that I can pop down to P.A. Society Head Quarters to lend a hand. I did this morning. There are 4 volunteers helping the small amount of staff run the organisation . The person there today was inundated when I rocked up. As they are everyday. We could talk for weeks but I said, ‘No, I’m here to lighten the load, give me a job.’ Soon, I was bouncing around sweating like a beast organising cupboards, stock checks, setting things in place for ease for the organisation.
Fundraising was mentioned. If you are a member then you will know the P.A.S. is partly sponsoring someone to undertake their PhD so they will be the lead in this insidious illness.
Sleepybunny brought up t-shirts and design ideas are being floated around. B12 is worth a shot. Love it. The purpose is to raise awareness and money.
Every organisation needs the cash to flash. Please brainstorm to make that possible; get the money coming in. We need Pernicious Anaemia or B12 deficiency on everybody’s lips. It rolls off the tongue and is at the forefront of people’s MINDS. For it not to be the forgotten disease.
We want it short, smart, stylish and sexy. Justin Timberlake sang, ‘I am Bringing Sexy Back.’
Apparently, Simon Cowell has a B12 infusion before his shows. Let’s get the X-factor as well as the Intrinsic Factor.
🐳
Written by
Narwhal10
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"B12 is worth a shot" = EllaNore came up with that one. I love it too!
As for the PhD - I think this is great. I keep reading about there doesn't seem to be much info about it. I could not find anything in the newsletters but I haven't read all of them. Will they say who is it, what is the topic, which university/lab they are affiliated with?
What kinds of funds are they looking to raise? More Phd students (very expensive), or to cover operating costs, or run more conferences, or to have a paid executive director, or ...? Obviously more money is always better, but if they had specific targets with specific goals, dedicated fund-raising actions could be taken towards for those goals. Otherwise it remains vague and a bit of a moving target, if you understand what I mean.
Do they make their financial statements available to members? I am part of another nonprofit (as treasurer) and we make a summary plus our full yearly financial statement available to all members - including sources of income by type and expenses by specific category. I think members appreciate the transparency, and they can see exactly where their dues are going. Just a thought.
I was a member of the PAS for a few years but didn't continue, mainly because I was broke from being unemployed (due to B12D), and partially because I didn't know what else they were doing besides the helpline and the conferences (but I may have been too brainfogged at the time). I also don't agree with their stance on self-injection (at least as expressed on this forum), so that has also turned me away from supporting them.
They may also consider reworking their membership dues. e.g.
- Adding a "hardship" membership dues category (of a free amount field with for example a minimum of 5 pounds). In the nonprofit I'm a part of, very few people actually end up using this option, and those few that do, I assume they really are in a hardship situation. Given that many of us lose our jobs due to this disease, there many be people that want to contribute/join but can't afford even the 20/10 pounds.
- To offset this, they could also add "platinum" membership (the only metal left haha) that's something between 50 to 75 pounds/year. There wouldn't necessarily have to be more benefits associated with it, just that people who want to donate more can (and believe me, there will be people that do that, because we have this option and people do donate this, and more - we also let people join with any other amount, and sometimes do get large amounts).
- And finally, perhaps remove the lifetime membership, because that will limit future income (tho keeping people already on it as legacy lifetime members) - or increase it to several hundred pounds to encourage more people to sign up for the yearly membership.
Sorry for dumping this all on you! I suppose I should give them this feedback directly, but as a non-member, not sure if it would be appreciated. Ah well. Feel free to forward this to them if you think it's appropriate.
Very nice of you to go volunteer! Running a non profit is hard work!
Well, I'm not sure! ... When I tried to make the one large post with all the information about SI (source info, videos, etc) so that it would be easier for everyone to have the info and for us to keep it up to date, it got removed and the admin made the following post healthunlocked.com/pasoc/po... "As a charity our sponsors are not able to actively promote self injection without medical supervision."
We can still post safe sources when people explicity ask for them.
I haven't seen anything from the charity itself e.g. via the their website/flyers on their official stance, and I'm locked out of the member pages because I never took the permanent membership option, I just joined one or two years at the start.
I guess they are just trying to cover themselves in terms of liability, and they don't want to lose their charity status, so I understand that. It's just.... I don't know. You know? It's available OTC in a lot of places including the country I live in so it's not like we're talking about drugs or highly controlled substances. 🤷
Then they should def also think of merchandising - mugs, tshirts, pins, etc with the PAS logo and whatever slogan or whatever. Thyroiduk does a good job of that & periodically posts reminders on the forum. I recently bought usb sticks from them for that reason
I want to say Sussex University but I could be totally lying. I have about 120 windows open and so many documents. 🤷♀️
Problem one :
Who would be responsible for ordering from the printers and physically putting the t-shirts, mugs, pins etc at PAS HQ to store ?
Who would pick up the orders from the computers ?
Who would send the mugs, t-shirts, pins in the post ?
There is absolutely no man power. They have a few staff and 4 volunteers answer all the phone calls and emails from around the world. They still need a moderator for here.
I went in to make up packs for GOLD members (which is 7 items of PAS merchandise) and ended up organising just ONE extremely high cupboard. It took over 3 hours. Fortunately, I had Lycra on so it was a workout. 😂🤣
There are lots and lots of companies offering customisation and, effectively, drop-shipping.
What I don't know is whether any have a clear charitable donation option.
Someone does a T-shirt design and adds it to a printing company website. (Avoiding any use of PAS logos or official connections.)
Someone buys one for, say £20 knowing £15 goes to company for producing the T-shirt, handling the order, sending it out, and £5 to the PAS. All absolutely 100% open and clear.
thank you so much Narwhal10 for helping out in the office. It is truly appreciated. I'm here again to answer some of the questions raised in the comments to your post.
We are a registered charity funded by membership, donations and grants. Like all registered charities we have to follow very strict accounting and reporting rules. We have a constitution which cannot be easily changed without approval from the Charities Commission which governs how we run the organisation and set up groups of membership.
Yes there are 4 volunteers on the management team, but we have a board of trustees and a number of helpline and support group volunteers and numerous experts from Universities and Health Care who help us on request. We are very grateful for the time all these people give up freely.
We do have to pay for somethings although we are lucky that we get a very few items at cost or for free. There is still much routine stuff to pay for like telephone lines, website maintenance and hosting, insurance, utilities, expert training for staff, IT security etc. These ongoing costs are regularly reviewed and we look for the best deals. We also have commitments that we have agreed to which are bigger spend like the recent JLA exercise which was hugely important and supporting two PhD students one at the University of Surrey and one at QIB Norwich. We'd rather not publish their names here on this general open public forum, they are students and entitled to control their privacy. The University of Surrey project has been covered in our newsletter to members in the last three issues and the QIB research student only recently started so will feature in future newsletters. Both students work closely with the management committee and regularly report to us. We are holding a seminar in October for members online and one of the topics will be the Surrey project update.
All our accounting is transparent and audited (auditors are another cost) and reported regularly to the trustees at board meetings and at the AGM. All members are welcome to attend the AGM and ask questions. The AGM takes place annually and the next one is 16th September. We hold the AGM by Zoom so all members can attend regardless of location.
We have a workplan which is regularly reviewed and covers the priorities the management team will work on. This is presented to and approved by the board of trustees. All the items on the workplan are aligned to our charity mission of Improving the diagnosis and treatment of PA which we do under three headings: Lobbying for change, Raising Awareness through information & Education, and Providing Support
Fundraising is important to us. We have many things we want to do but we have to prioritise. The idea of an online shop is on our workplan and we may consider PAS branded merchandise in the future but this is not currently a priority for 2 reasons. 1 research showed that there is not currently a market for this. Yes a few people get excited about a t-shirt periodically but they don't follow through with purchase or they buy one item and that's the end of it. Repeat and consistent income is what we need to focus on. There are upfront costs with stock, legal contracts etc with suppliers and in setting up a store. There are also costs for running a store like postage, insurance. And 2 we need volunteers to send stock out, we have tried! People come and go and often don't stay around after initially volunteering, perhaps they don't feel well if they have PA or they feel better and get on with life. Who knows! For now other priorities like NICE and Education means we think spending our time and resource on researching and setting up an online store is not the best use of our funds.
Membership fees are set very low. We know times are hard for many but ongoing Silver membership is £10 per year. We purposely keep this low because we know that many with PA may have employment challenge. Many of our members also have set up standing orders with a regular or annual donation on top of their membership which is amazing and hugely appreciated. What is important though is that regular income each year which helps us maintain and run the charity and plan for the future. Many people join, get the information they need and then don't renew. This is a real problem for us because we are investing in future members as well. What is most important in membership is that we are the most respected charity in the B12 space for providing a group of people (members) who contribute to quality surveys which help important research. That is the main reason we want people to stay members.
Fundraising and applying for grants falls into two categories, 1)increasing our funds to support ongoing work and 2) specific targeted projects. We tend to apply for grants for targeted projects. For example last year we got a grant to help with our Social Media activities. We are looking now for grants of around £2000 to contribute to professional training of our in house experts who provide support in report writing for legal cases and disputes. We have a huge project for education coming down the line and are getting quotes for that. Many people think that companies give things to charities for free but they definitely don't! We have to pay our way and negotiate discounts all of which takes time. 3 of the management committee all have day jobs too!
One fundamental point here is that this Forum is not membership of the PAS. We host the forum and provide some of the admin in the background like blocking and removing inappropriate posts where they are offensive etc. However all the posters here are free to comment on their experiences and share the information they have. We will step in and correct where necessary but we do not police the site. This site is free and we get no financial benefit from it. There are many Facebook groups and other free sites about B12 and PA but they do not all do research like PAS. I regularly see people on here say "we should do this or that" but then they find out how difficult it is to get anything of the ground. We have an excellent foundation that Martyn set up with PAS as a charity and we are building on that and moving forward. I think in the past it hasn't always been obvious what the charity does because communication wasn't a focus in previous years but we do know the value of that and are trying to put it right - hence these long answers!
Please become or stay a member if you use this Forum because then you can see transparently what is going on and contribute to what we do in the future if you have ideas and time.
All feedback is welcome but please do direct it straight to the Charity email address and it will be addressed. It is better this forum focuses on helping people find their way through this horrible condition often at a time when they feel quite low and alone.
Thank you Narwhal10 for your posting and your help at PA HQ today. I'm quite a bit further west from Bridgend so not able to pop around and help out for the odd few hours, grateful that you are able.
Think EllaNore's slogan 'B12 is worth a shot' is brilliant - brings the vital substance to the forefront and the slogan is short and sweet and to the 'point' (!).
jade_s idea of 'hardship' membership is a very valid suggestion in these constrained times. I'd be happy to support that too.
Hi Jan have you seen the t-shirt designs posted by EllaNore here on SB's post? I think she's looking for feedback and so far there have been only a few comments healthunlocked.com/pasoc/po... Should we start a new thread for it?
I noted the Cymru. It does not really matter where a person is in the world. My concept was to print off a poster, do a cake bake, have a raffle, hold a coffee morning. On the proviso that a person is well enough.
If 50 members raise £20.00, euros, dollars, Yen. Then send that as a donation to the P.A. Society, it would add up to £1,000.00.
Yesterday, I went for a swim, I use different leisure centres. I walked in to one I had not used for years. Lo and behold, the receptionist and I greeted each other, we had a long chat catching up. B12 injections were discussed and I handed over a P.A. Society flyer, saying, ‘Please join.’
Today, I need to renew my membership to a fellowship of 180,000 women and tidy my messy home for an hour. Then I am off to another organisation to help out.
Just so you know a little of me, I undertook V.S.O. work wherever and also worked in another developing country. It was my dream and goal to work in these environments but I was hit with this insidious illness.
Every day, I put a £1.00 coin in a P.A. Society tin as I know how valuable each and every contribution or donation is to an organisation.
Thanks Narwhal10, I totally agree that any event, no matter how small is valid in raising awareness. I did attempt a few years back during the awareness week to take a PA Society flyer into my GP Surgery and they refused to take it. Wouldn't explain why and were quite hostile. My physio was more accommodating and did display one. Small steps, but often me thinks!
Oh there’s a surprise that the Surgery would not put up the poster. Yet a person who does not use pharmaceuticals was more than happy.
I am a little devil and strike up random conversations with people. It could be that is a lovely top. Oh you bought it in Montenegro but you are from Gambia. You came here to study Politics and your husband is B12 deficient.
The P.A. Society website states that there are 8,440 members.
So, for good measure, I will say 50 % are far too ill. Imagine 4,220 people holding an hours coffee/tea morning around the world. All at different times and dates.
I would laugh my head off if someone posted on social media their event which is being held in Massachusetts and entitled, ‘Boston Tea Party.’
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I love it too! 
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