CUORE MATTO


CUORE MATTO PRESENTATION NOTES

 

1. CUORE MATTO

CUORE MATTO means crazy heart, and our logo symbolizes the way surgeons have cut apart and reassembled some of our hearts, or the way arterial and venous blood is not properly separated, or maybe the puzzle our anatomy is to many cardiologists.

We currently have about 150 full members, mostly living in the german speaking and less mountainous parts of Switzerland. Full members have CHD and are over 16 years old. We also have sponsoring and solidarity members, who don't have CHD and can't vote.

They constitute the general assembly and elect the executive board, which works together with groups who organise 4 educative meetings, 4 social meetings and a vacation week each year.

In addition, all members can be a resource of some kind at some point, so that more projects can be accomplished.

 

2. CUORE MATTO

CUORE MATTO was founded in 1999 by some adults with CHD, with the help of some parents and physicians.

The mission is to promote care and information for ACHD and contacts between them.

This is to be achieved by giving support to ACHD especially regarding health care,

organising educative and social meetings,

lobbying, collaboration with the health care system,

and being in touch with other advocacy groups.

 

3. CUORE MATTO

I'll just give you a rough overview of our budget. Linus is our chief of finances and will answer your question afterwards.

Expenditures include administrative costs, costs for meetings and the holiday week,

our part of the journal we edit with the parent organisation,

and membership fees. We are a collective member of a large advocacy organisation that has a number of lawyers, a specialised travel agency for the disabled, and many more services.

Unfortunately, up to now we have had to pay some taxes!

We get our funding through membership fees and participation fees for meetings, both are very low.

Then we get some sponsoring and donations.

Fundraising will have to be developed a lot in the future.

Hopefully, we will soon get a recognition as an organisation for the disabled. Recognition depends on the number of members benefiting from disabilty insurance,

and would mean state support!

 

4. CUORE MATTO

In the last years, a few large projects have been accomplished in addition to our routine activities.

The Swiss Heart Foundation edited in german and french an information brochure on CHD in adults. We contributed an entire chapter, translations, and personal stories.

In 2004, we hosted the biannual european Young Hearts Conference, where delegates from ACHD advocacy groups from12 countries met to get to know each other, discuss themes common to all such as sports, travelling, insurances, and try to set up europeanwide collaboration.

Last year we organised a party for youngsters with CHD who were invited via pediatric cardiologists, in order to make them meet, have fun together and get to know CUORE MATTO. Half a dozen of them became members.

Delegates from CUORE MATTO increasingly attend medical conferences and give presentations.

 

5. CUORE MATTO

Next year, CUORE MATTO will celebrate its tenth anniversary and we will organise a few special activities then. We hope to offer our members an attractive programme, and we also hope to get some media attention.

We hope to organise events for youngsters again,

and we very much hope that the european network will become more effective.

We will have to stay involved in the development of the care of ACHD. The people who make decisions tend to be fascinated by evidence based medicine and large statistics. To them, we're just a nonsignificant nuisance.

Many more projects could be accomodated, including international ones. Actually this could motivate some people in high places to do more for us.