Italiano English Franšais Deutsche Espa˝ol
Not logged in ¦ Register ¦ Login
Search:
Facebook Twitter Youtube Ring1 14 USA
RING 14 NON-PROFIT ASSOCIATION
HELP AND RESEARCH FOR CHILDREN WITH RARE GENETIC DISEASES

Please make a donation

Please make a donation



DIARY of the CONGRESS

DIARY OF THE CONGRESS

Hallo Association Ring14, I’m writing just for thanking you for the fantastic opportunity you gave us: for the clowns of the Red Cross of Reggio Emilia it was a great experience! I hope there will be the possibility of repeating such an experience with all the childrend, boys and volunteers I knew that day! Thank you once more waiting to meet all of you again! Red Cross Volunteer at the playing room

Dear Association Ring14, This morning, rising from my dream of a fantastic and perfect congress, I realized that really the congress was perfect and fantastic. You are great and I’m proud of making part of this Association. Let me repeat herebelow what Daniela read in the name of all families and people making part of Ring 14: “Even if not forseen, let me say two words: during the 4 years of life of the International Association Ring 14 we learnt that it is possible to dream a better world and that, brick on brick, it is possible to create a place where all of us can take refuge. We learn that from a little flame a big fire can flare up warming our hearts. In the name of all people joining the International Association Ring 14 I have two “special persons” to thank for all that; it is in fact hank to their engagement that the 1st congress became a reality. They showed us that the shortest line between two points someting is crossing the stars”. You allowed a lot of persons lost in the darkness to take their way towards the hope. I’m proud of you. A big hug A relative

Let me say that this congress was for me as pure oxygen. I have reshuffled the problem without underestimating it. We are a lot of persons doing all the possible for our children but we have not to waste time looking for the “impossible”. I’m better now, I got new friends. You are really great and I think that if you succeeded in organizing such a congress it will be very easy for you to group a lot of persons and to come to Alba for eating all toether at GEMMA’s. I rely on you! Try to organize on the beginning of November before fog arrives…! See you soon! Mother of a girl with deletion present at the congress

Thank you for the opportunity of work offered to me. I wish to give you my direct coordinates for eventual future necessities of translation. I wish at the same time to present you my best sicerest compliment for the good success of the initiative undertaken which enriched all of us from a personal point of view. Interpreter

Thank you and compliments for the passion, determination and competence in organizing the event. It was a great pleasure for me to give my little aid at the playing room. Good luck for the future and……… go on! Honor to the life. Volunteer playing room

Hallo Association Ring14, I’m very glad to learn the good success of the Congress. It’s the right prize to your great engagement. I regret not having been present but the course at the university requires the obligatory frequence. I’m particularly happy to learn that the event obtained a great participation and that answers in the search are more and more. I did not forget Matteo, I often think to him with love; I hope the new school will be for him a happy and positive experience. Give him a big kiss from me. Ciao A friend

It was my intention to wish you “good luck” before teh congress starts up but then the right moment went over ithout I did it… In any case I followed you on the newspapers with great interest, pleasure and emotion. Stefi, I think you are carrying on a very important thing. You are great! Good luck for the future! Lupo – friend

A few words for telling you THANKS FOR EXISTING AND FOR RESISTING! A friend

Hallo Association Ring14, I hope you have recovered the great effort of the congress, but at the same time I hope you are still keeping the great emotions had. I thank fumi for having invited me. Sincerely it was no simple to find the time among the diffferent engagements but I’m very happy to be there. I followed you thinking to us as association 10 years ago. Surely all what we are doing will not change situation in the near future but it is very important to let people know what is Ring 14 and, even more important is to work …. and to work a lot so that the future of our children could be the more srene than possible and the quality of their life the best possible one. Ciao. A relative of the Association x fragile

Association Ring 14, We wish to thank you for the organization of the Internation Congress. We were were surprised of the number of persons and medical specialists participating the congress. Furthermore, we note from their part a great interest towards Ring 14 Association and we have much appreciated the possibility of speaking friendly with them submitting our questions without the limit often we find in the medical ambient. We felt the friendship, the emotion and their understanding about the difficulties we are daily facing and the problems faced by our children. We think the organization of the congress required a great effort from your part considering the high number of attending people (families, relators, volunteers…) and we congratulate with you. The difficulties we have faced during our stay in Reggio Emilia related to Quentin : the unusual time for meals, lack of nap in the afternoon, and convulsions (epileptic seizures). We appreciated the possibility of meeting all the families having different origin and of exchanging with them our feeling, emotions and problems having the same difficulties. It was encouraging for us to see that in spite of Quntin’s seizures during the meals the present persons did not show to be bored but we kept their comprehension. We wish to thank also the volunteers who took care of our children with love and joy as well as the Staff of the Hotel who was very friendly with Quentin. We are realizing that you are working so that Ring 14 chromosome and its effets on our children is not considered as a fatality but as a heavy problem to be understood. A family

Dear Association Ring14, good morning, Happy to be back at home but feeling a pang in our heart thinking at the very strong emotions of the two days spent with you. Thankful for the warm welcome all congress people reserved to us, we have greatly appreciated the sincerity and simplicity of the persons. The organization of the congress was perfect and we can understand the heavy work requested, best compliments, we admire you! The two points to improve are: * There was not a place for the children rest so that they might sleep, we well know how important sleep is for our children! And the playing room did not allow a quite rest! * Timing was very intensive and consequently we had no necessary time to discuss with family, to exchange opinions on relations heard. Many thanks for the high quality of french translation which allowed us to easily follow the conferences : thanks to the two french-italian translaters. We appreciated the quality of interventions and the fact that conferences were understandable for all of us, both the scientific and the other ones. BRAVO for having grouped all those persons! What to say of the very affectionate volunteers who took care of our children, of the adorable doctors and searchers so available to hear and to answer our inquiries. We had the feeling not to be alone anylonger, to have found a second family able to understand our pain, our doubts, our joys. There was a special atmosphere, full of positive waves where fraternity and love were in the air! It was so great! We had the possibility of knowing a little of Italy out of the congress, Italian people is very agreeable, we have discovered the fascination of your country and we hope we will come back for appreciating its architecture, story, culture, etc…. That first congress was a greatsuccess, reach in experiences, emotions and meetings! It was hard enough to realize the handicap degree of some children but at the same time we found a hope and the will to fight. We have been knowing Joshua diagnosis since 7 months only and it’s still difficult for us to accept our relality, might be in the future we shall accept it? Back to France we want to advertise information on Ring 14 syndrome and on the Ring 14 association encouraging grants on its favour in order to continue the program and the search. A great BRAVO to Stefania for her devotion and to all people who contributed to the success of the congress. Words cannot express what we have in our heart but be sure that the feww days spent together will always be in our mind! The newspapaer on the web site is really a good idea! Thank you a lot for all what you are doing, Sincerely A family attending the congress

Dear Association Ring14, I would first like to express my appreciation to you for organizing such a fantastic conference. It was so thoughtfully put together, addressing both the medical and social concerns of the children and families. It was such a comfort to be a part of a community with the common goals of finding the best way to care and love for these precious affected children, and providing support to both parents and siblings. The information was valuable, and the bonds made invaluable. Thank you for your focused passion. In truth, this conference was difficult for me, as I suspect it was for all new parents of ring14 children. I felt overwhelmed at times with the enormity of situation - "How will I be able to cope with caring for this precious child and all of her challenges for the rest of her life?" I was encouraged though to see the many examples of good parents who continue to find the love and compassion needed to meet the need of all their children. The things I would suggest for future conferences are shorter days and more social time for the families to interact with their children. The children (and parents) were exhausted in the evenings. I really liked that one day focused on medical concerns and the other on social, but I found it difficult to concentrate from 9am until 7 or 7:30pm. I might suggest having 3 sessions each day instead of 4. I would also suggest having one informal social activity to be equally shared by parents and children, something like a picnic in the beautiful park outside the hotel. These are minor suggestions though and I want to emphasize that I thought this was an extremely well organized event. I also want to say that I was so pleased with all of the volunteers who helped with the children - this was a critical part of the conference that enabled the parents to truly participate. My hat goes off to all the ladies - you did a wonderful job! Please let me know if there is anything I can do to help this organization. Sincerely, One family

For Association Ring14 I wish firstly to wish you Happy New Year and, as already expressed to Paola, I wish to reconfirm once again that I will always keep in my heart as a treasure the fantastic experience of the first afternoon of the congress spent with you. The time spent among the children and their parents let me understand that further to cares, drugs and remedies they need undoubtedly a lot of love and comprehension, both children and parents. I had in fact the opportunity to get acquainted and to spek with the parents of Lorenzo Ingagi, a young married couple who opened their heart expressing their pain to me, unknown person and I realized that to act as a volunteer is just to share pain, joy and dfficulties. I sent my Christmas wishes to them and I hope Lorenzo is going well enough, the same I wosh toyou child, Stefania and to everybody I knew during the congress. Ciao – A volunteer of the playing room

Torna in alto Back to top