RETINOSTOP
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RETINOSTOP |
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"We all felt an enormous shock when we were faced with
the fact that our child was affected. The number of letters in the name of the
disease in itself evoked a very complicated disease. After many sleepless nights,
after many " whys " and finally the reality of the diagnosis, a multitude of
questions come to mind:
What is going to become of our child?
How is he/she going to deal with the treatment?
What are the side effects going to be?
What are his/her chance of recovery?
How will he/she be able to live with this handicap?
Like many of us, we had the reflex to question other parents in the same situation,
to seek out information sources and information from professionals, or to look
for an understanding soul to speak with and to look for moral support from close
friends and family members. In order that our experience help others, we decided
to establish an association"
The objectives of the RETINOSTOP
association are the following:
* To come to the aid of families
* To support research on retinoblastoma and to participate in equipping treatment
and diagnosis centers.
* To promote early diagnosis and to make the disease more well known among health
professionals and government administrations.
* To facilitate parents meeting to share their experiences, their hardships
and their hopes.
Aid to families
This firstly involves coming to the help of oftentimes young parents in distress
who suddenly discover the disease that their child is afflicted by.
The association is ready to help them deal with the situation caused by the
diagnosis.
This also involves material aid:
* To financially aid those in need
* To help deal with immediate expenses
* To particularly provide aid for equipment for those who will afterwards become
visually impaired
Aid for research
With the help of a scientific board, the association actively participates in
endeavors involving research and fighting the disease by financing all or part
of projects and by participating in providing equipment oriented to research
on retinoblastoma.
Information
The association participates in providing information for health professionals on
the characteristics of retinoblastoma by organizing conferences-debates, information
circulated on the Internet and by participating in symposium.
Facilitating encounters
The association is made up essentially of members including parents and friends
of children afflicted by retinoblastoma. The association tries to promote encounters
among members wanting some comfort
and information from other parents who have shared the similar experiences.
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Retinoblastoma, like many diseases, reminds us that we all
have imperfections of different origins which can be a handicap. There can be
imperfections we are unaware of and which are thus difficult to fight against.
There are also imperfections we are aware of which we try to hide, for example
character defects and then there are defects everyone can notice and that are
recognized by society and are oftentimes viewed a handicap, which is exactly
the case of " visual impairment ".
Many visually impaired individuals live virtually "normal" lives.
Access to higher education and numerous work sectors has been greatly facilitated
by computers. Memorandum or books can be read after being scanned. The words
in the text can be enlarged, read with a vocal system or transcribed in braille
on a barille dsplay on which the letters pop up as points. Using a special printer,
braille can be printed out on paper. By knowing the computer keyboard by heart,
like many sighted individuals and by using combinations of keys to replace the
mouse, visually impaired individuals find solutions using computers nowadays.
In France some financial aid, is available for those seeking to purchase this
significantly costly material.
Seen from a larger perspective, technology, the development of other senses,
but also personal experience and "tricks of the trade" acquired to compensate
some difficulties, can improve daily living conditions for the visually impaired
individual.
These individuals have lives which are similar to other individuals' lives.
Some have families, others live as man and wife with individuals which face
the same or different difficulties.
The difficulties are to be ignored, but they probably favour the development
of other qualities to deal with the situation (auditory attention paid to the
environment which can lead to a capacity to listen to others). These are perhaps
the qualities which attract attention and enable a very rich family and social
life, and contact with associations and friends given the fact that these relations
are not based on mere appearance. Who is to say if the impairments of each and
everyone of us are not, in this way, at the roots of some exceptional forces?
(this paragraph was drafted by a visually impaired individual)
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In the RESEARCH field, the association was able to provide
funding for a project carried out by Mr Maillard, a chemist and researcher at
the CNRS, involving the evaluation of the therapeutic potential of synthesized
products applied to the treatment of retinoblastoma using dynamic phototherapy
on the animal model grafted with retinoblastoma cells.
In terms of EQUIPMENT, RETINOSTOP
contributed to the purchase of laboratory material used to study the genetic
alteration of the RB gene for the benefit of the Dr. Stoppa-Lyonnet's Genetics
department at the Curie Institute in Paris.
The association likewise participated in the purchase of digital camera for
the capture and analysis of images for chromosomic imagery for the department
of Dr Couturier, of the Curie Institute's Insem cytogenetics Unit 509 (molecular
pathology of cancer).
It is to be reminded that a RETCAM camera was purchased jointly with ARC
and the Curie Institute for the benefit of the Doctor Desjardin's Ophthalmology
Department. This camera enables wide angle ocular fundus photos to be taken
with images stored and filed on computer which makes it possible to compare
ocular fundus images from one examination to the other. The Ophthalmology Department
at the Curie Institute is a reference in research and treatment of retinoblastoma
and is one of the centers in the world with such a camera.
With regards to AID TO PARENTS, the association along with the APAESIC and
the Curie Institute carried out a study by Ms Delage, psychologist at the Curie
Institute, on the experience of parents of children with retinoblastoma.
This study helped the medical teams to better understand the needs and expectations
of parents with regards to the introduction and hospitality, information, organisation
of exams and to provide the means to better integrate the parents into the procedure
for accompanying children during and after hospitalizations.
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Retinostop est une association loi 1901. Parution au JO du 1er mars 1995-page 927-n°1745 |
