|
NAEVUS SUPPORT GROUP(Melanocytic, strawberry and port-wine stain birthmarks)The support group aims: - to provide information on various types of birthmarks
- to introduce parents of children with similar birthmarks to each other
- to provide support by existing members to newcomers
- for every enquiry to be dealt with on a personal basis
- not to impose any charges for the services offered, until the expenditure
is so great that gifts will not cover expenses
- to be voluntary and independent
- to produce two newsletters per annum
- to hold two informal get-togethers per annum
As you will appreciate, all cases of birthmark-affected families differ
considerably and therefore we cannot distribute general information packs.
Parents of a birthmarked child should contact us direct. We will then supply
precise information relating to the type of birthmark in question and their
particular need. All enquiries are dealt with on a confidential basis, and only
if the person specifically asks for a contact family will we pass on their
names. It would be very much appreciated if the parent could forward a large (A4)
stamped (29p) self-addressed envelope stating in which type of birthmark their
interest lies, i.e.: - port-wine stain
- CMN (Congenital Melanocytic Naevus)
- strawberry mark (cavernous haemangioma)
- other
It is now 10 years ago that the first foundation stones were laid in forming
the Naevus Support Group, and during June 1985 the first letters were sent out
informing various "official" offices of our existence and aims. Since
then we have gone from strength to strength. However this could not have
happened without the support of many members of the group, the medical
profession and our own friends who, so willingly, give their time and help at
our meetings and lend a hand, when asked". Craig Amor Research Fund The Research Team Drs D & A Atherton and B Mayou write as follows:
"In April this year, the Craig Amor Research Fund, which has been
supporting the research into the Congenital Melanocytic Naevi over the past
seven years, came to an end. We have now set up the DMN Fund to serve the same
purpose at Great Ormond Street Hospital for Children. This has been made
possible by the hard work of some parents who have been organising garden
fetes, cake stalls, fun runs, etc. At the moment the funds in it are just
enough to keep Mrs Birley doing the administration once a fortnight, to buy
stationery, etc., and to pay the phone bill. All this means that the CMN
registry is just ticking along and the research itself has been put on hold. It
would be sad if we had to stop research because we are the only long-term study
of these children now going on. Although we have applied to bodies like the
Medical Research Council and the Cancer Research Campaign for funding, they are
very slow in making decisions and the outcome is far from certain. We have produced a pamphlet about the CMN fund in conjunction with Great
Ormond Street Hospital. It explains about CMN and what the research is trying
to do. If any of you would like to hold a fund-raising event, however small, we
can send you copies of the pamphlet to show people. Just telephone: 020-8632
4279. |
