CEO Network Meeting
Monday 29th June 2009 9.00-10.30
28th International Epilepsy Congress Budapest
1. Opening and welcome Michael Alexa welcomed all the participants for their large participation at this meeting. It showed that this meeting is important to all the participants as everyone can learn from each other.
2 Minutes of the last meeting The minutes of the last meeting held in Singapore in 2007 have been distributed electronically and there were no questions arising from them that were not on the agenda.
3 Successful fundraising initiatives every country that took part in the meeting was kindly asked to give their experience in fundraising. Weve heard a lot of different views which are:
a. Chile Fundraising is very small as lot of institutions ask for more. Usually it comes from pharmacist as they distribute medicine at a lower price.
b. Pakistan It is very important to involve community and politicians IBE should be of help the Pakistan self help association needs some recommendation letter from international organisations to receive charities and donations.
c. Norway It receives about 50 % of their income by government funding -> about 2 million Euros annually. But there are rigid government restrictions. Fundraising is not common as Norwegians are used to organisations are being funded by the government. Norway does receive some funding from pharmaceutical companies and other companies but stringent restrictions are set in place by the government.
d. Australia It receives between 0 to 70 % government funding. But there are a lot of other problems like floods. There are five different fundraising models existing in Australia but on the other hand has the corporate sector has disappeared during the last 12 months. Australia also has a donor program: its usual to have more donors, but the average donation amount is down.
The five existing fundraising models are as follows:
i. Opportunity shops converting donated goods into cash
ii. Lottery raffle program
iii. Direct miles program
iv. Door knocking program
v. Regular giving
Nowadays everyone uses professional fundraising agencies the old fundraising model is dying ..
It takes a great amount of time to grow up the donor pyramid .. But its working on long term support as the growth is coming from a regular giving in Austria its called Bankeinzug (or in English automatic deduction by the bank).
But Australia is also looking money for research funding!
Norway asked: Who are the donators Norway doesnt know! As its automatically being deducted from your bank account, you should be able to find it out Youve got to fill in a form at your bank.
Are there legal issues? Yes there are strict rules youve got to register in the state you dont get any money nothing.
e. Australia electronic fundraising is the future! Electronic direct mail can help a lot! Thats why the list is important! But be aware of the fact that old ladies who are donating if they have email , read the mail differently than 20 year old! Thats why the printed issues of the newsletters will always have the place! You can also raise money for training workers at the social department of Australia.
f. New Zealand It receives government assistance. About 30 % of their income. All community organisations receive a share of the profits from gambling come back to the community.
New Zealand consists of 17 branches which were in former times raised money separately, now fundraising is centralised at the headquarters and they are also looking at the internet market.
Norway which field of internet marketing?
g. Germany The funding in Germany consists out of memberships, government funding, donations and money from the state health insurance. In Germany all people with disabilities get money. This money is being collected as Invalidity tax and is being distributed throughout the self help groups but they must tell them what they are doing with the money. Fundraising in Germany consists mostly out of pharmaceutical companies.
h. Finland There is no special fundraising as 2/3 of the budget are being covered by the government and 1/3 by donations. The Finnish Epilepsy Association is a part of a group of self help associations and this association is colleting money at every vote! (= Youll find a bucket there and there you can put in your money. At the end of the day the total amount is being split by all the associations!) The Finnish Epilepsy Association also asks for money in their magazine. Sometimes they get a will. This year the Finnish epilepsy Association celebrates its 40 years anniversary! A gala dinner will take place! Please send us a link!
i. India There is NO government funding! But on the other hand there is also not much paperwork! The epilepsy centre is a former school in the heart of the city! Concerts for fundraising to give medicine to the poor are being organised! Expenses are coming down as they use specialists with epilepsy who donate their time!
j. US Fundraising is diversified. There are 56 affiliates of which some get state money. Federal funding, internet based fundraising, golf games, giving campaigns are also available, but there are NO lotteries.
Australia asks: What is the quest program?
Answer from US: The Candled light society become donors BUT frequency and regular giving is important! The challenge is to budget it! US estimates those donations based on a five year average!
This years national walk took place around the US capitol. When you take a closer look at the participants, youll always find a connection with epilepsy, when they come out of their shadows (e.g. persons with epilepsy, parents, relatives, children, neurologists, nurses and so on!) At this years national walk 9000 people from 48 states and Canada took part! The people are not feeling alone! This year a lot of neurologists are there! Players of American Football also raise awareness!
k. Sweden Echoes what Stine (Norway) has already said government cut down support but still 60 % are government funding. There is a cooperation of all self help organisations and all of them apply for a huge national inheritance fund: their quest goes into a common pot and then you can apply for money! But there are NO charity events!
l. England It receives all of their money from fundraising. Thats about 5 million USD per year. There is no governmental funding except a small grant of GBP 11.000 a year for our work in Northern Ireland everything is running! Some of their fundraising methods are:
i. Some services are commissioned by the BEA to be used. For using them a fee has to be paid.
ii. Local support work is being supported by the internet fundraising. -> Internet fundraising is becoming increasingly important and profitable for the BEA. Examples include affinity marketing (with companies like Amazon), online sales of our own products, online donations and membership renewals.
iii. The fundraising team of the BEA has changed when the CEO leaves, everyone else leaves too.
In the past 12 months the fundraising team of 8 people has seen several changes of personnel including the 2 most senior managers. This has allowed for some re-organisation of duties and enabled us to refocus the team more on online and internet based fundraising.
iv. Text donation SMS donations SMS donations are proving to be popular with supporters and currently generate up to GBP 1.000 a month. This looks like it has more growth potential and is very easy to manage.
-> could you please provide more details as this looks increasingly important to all of us!
v. Exploit all opportunities in fundraising sights!
vi. Sunflower fund A new web based social networking fundraising opportunity is in development. It is called the Sunflower fund. People set up their own fundraising web-pages within a framework that we provide for them. This is usually done as a tribute to a deceased relative or friend. The money they raise through donations and fundraising events comes to Epilepsy Action.
Weve got to work together in fundraising on an international basis! -> As the internet becomes a more widely used tool in fundraising, the old boundaries between countries around the world that limited fundraising to within one country are disappearing. Epilepsy Action is not alone now in raising money from all over the world and not just from within the UK. We should all be aware that in time this may become a source of friction and tension between IBE members.
m. Ireland The fundraising system of Ireland is similar to those of Sweden and Norway 60 % government funding, events, door to door, formalised research program and they upgraded the website and made it easier to donate online.
n. Austria There is government funding available but the government only finances a project when a person with epilepsy finds a job! Thats the same system like in Germany Invalidity tax. Right now there is no such project running were working on it. Austria also gets support from the pharmaceutical companies they sponsor e.g. the printing of the newsletter or the epilepsy day.
4 CEO page Its more or less empty! Please send letters and material to the IBE! There should be a person who is responsible to remind the participants to tell the IBE the latest developments. On the other hand a contact person be appointed in the chapters who are sending or posting the relevant information on the CEO page. Usually this person is the contact person of the IBE in the chapter. Those persons receive a password to use this page. For Austria Mrs. Liselotte Groessing Soldan the head of the Austrian Epilepsy Association received the password.
a. Mrs. Carol dSouza (India) and
b. Mr. Greame Shears (Australia)
have been appointed as the reminder persons! We wish the reminders a nice job and that the page may be full soon!
5 Opportunities for collaboration Phil Lee points out that there is a natural affinity that countries with same language work together we dont have to invent the wheel another time! Examples are:
a. NORDIC its an epilepsy committee of the Nordic countries (Norway, Iceland, Finland, Sweden, Denmark) that meets annually to share experiences ant to explore joint initiatives.
b. DACH German (D), Austrian (A), Swiss Epilepsy (CH) Associations are working together there is also a united homepage!
c. Australia and New Zealand
d. Great Britain and Ireland the list goes on!
Informal network is important ask them personally see them as a networking group!
WE CANT JUST WAIT AND SIT AROUND THE TABLE EVERY TWO YEARS!!!
6 Any other business
a. International Epilepsy Day WHO have a block on an international epilepsy day as there are already too many days existing! . There is no additional benefit! Another problem would be to find a date this is incredibly difficult as in some countries its more important than in others In Pakistan you can get a lot more attention from an international epilepsy day! On the other hand, existing epilepsy days, weeks or even months would loose their position.
b. International logo The IBE and Global Campaign logo do exist, but there is no common logo within the organisations a recommendation would be to put the IBE logo ALSO on the materials!
c. Mail from Pakistan 7th July 2009:
i. Active participation of families and patients with epilepsy particularly during epilepsy awareness programmes attended by philanthropists.
ii. With the cooperation of pharmaceutical companies particularly manufacturing antiepileptic drugs, should be requested for supply of free medicines for poor and deserving patients and help in organizing painting, singing and debate competitions of patients with epilepsy.
Answer from Austria:
Unfortunately I know an example from Georgia Europe: The medication for one month costs more than the person with epilepsy earns. Work for a person with epilepsy in Georgia? No way! So the person with epilepsy rather accepts the frequent seizures and buys something to eat instead!
But there are also good examples: UCB runs an advocate program for people with epilepsy where the people with epilepsy tell their stories as a part of the program. If you visited the UCB satellite symposium youll have heard Hanna Mathes from Germany shes one of those advocates Im another one!
iii. By participation and collaboration of media celebrities particularly film and TV artists.
Answer from Austria:
Its hard to find those celebrities to go Out of the Shadows. One example: I know that within the Austrian Parliament THREE persons with epilepsy are sitting but they want it to be a secret, as they are fearing restrictions!
The latest celebrity that went Out of the Shadows was Prince the pop-singer (ref.: epilepsy report south Australia & northern territory 2009 winter edition, page 4) as far as I know. Could it be possible to ask him on an international level of course to give a concert for the IBE in two years time in Rome?
iv. Other multinational companies (like soft drinks and fast foods) should be encouraged to support actively.
Answer from Austria:
As far as I know Mc Donalds runs the Ronald Mc Donald foundation a charity to help children if Im correct! But they dont do anything for epilepsy as far as I know!
If anyone of you knows any other examples or answers to all those statements from Pakistan, please dont hesitate and send them to the contact persons of the CEO page Mrs. Carol dSouza (India) and Mr. Greame Shears (Australia)!
7 Date and Venue of the next meeting The next meeting will take place in Vienna, Berlin or Porto! As it was decided one day later that the next European Epilepsy and Society Congress will take place in Portugal, the next meeting will be in Porto! The exact date and time will be announced on time!
Im hoping to see everyone in Porto!