2008. december 13., szombat

Christmas


Yesterday I went to donate blood.
It was the first time, so I was very scared, and they took about 450 ml, but after that I was feeling great!
I was thinking that probably this will help a life.
It's Christmas. Please think to the others, who are in need!

2008. december 1., hétfő

National Meeting in Buzias


On 29th of November was organized the meeting of our Romanian Hemophilia Association. Our host was the Clinical Medical Center Cristian Serban of Evaluation and Rehabilitation for Children and Adolescent with Type 1 Diabetes Mellitus and Hemophilia.

It was a national meeting, so people come from every corner of the country.
In the beginning Mr. Andrei Daniel our vice-president presents all the activities of the national association. It was a very rich day. There were many campaigns, conferences and found rising activities.
Then Mrs. Prof. Dr. Margit Serban tells us about her impressions toward our association. She retired from the presidency a year ago.
She said that we are on a right path, but she warns about the possible dangers too.
Then there was a free discussion about our problems and future projects.
I am very happy that everybody approved the twinning project with the Hungarian Hemophilia Society. I know that we shall have a lot of work but I think that this will be a new possibility to fight for those who suffer of hemophilia.
At the end I presented the Help for Hemophilia campaign and its results.
Before we went home, everybody agreed that 2008 it was one of our best years of activity.
Photos from the meeting and fom my travel: http://picasaweb.google.hu/kkisslaci/Buziasnov29?authkey=RbaTgr-lmJI#

2008. november 22., szombat

Covasna County Hemophilia Meeting


On 9th of November, our local association organized a meeting for it's members.
We were very happy to meet each other again because we didn't have the opportunity to talk since 17th of Mai, when we started the campaign.
At the beginning of our meeting I presented the campaign and it's results.
Then we were discussing about our future projects. We would like to do a twinning with the Hungarian Haemophilia Society. We are thinking to be a bridge between the two national associations: the Romanian and the Hungarian.
We have other projects too, but I shall write about that later.
Then we had a discussion about the factor supply. We have problems, but we shall see more clear when we participate in December at our National Conference.
We were very happy to have guests between us. They went from Brasov County. They want to organize their local association. They were here to learn from our experience.

So, things are going forward!

2008. június 14., szombat

Home


I’m at home again. Now, when I look backward on my project, I think that it worth the effort.
From now on, no Ministry Of Health from Romania can dare to say that the hemophilia patients have no problems.
From now on, we are not numbers writen on a paper and lost somewhere in a case.
From today we are truly existing!
You can find the interviews and stuff of the press conferences:

in Romanian:
http://www.libertatea.ro/index.php?section=articole&screen=stire&sid=195180

http://www.sanatate.eu/stiri/203?task=view

http://stiri.itbox.ro/stiri-online/sanatate/bolnavii-de-hemofilie-cer-sprijin-din-partea-statului.html

http://www.sanatateatv.ro/index.php?actiune=read&id=1003

http://www.topmedici.ro/index2.php?option=com_content&do_pdf=1&id=1641

http://www.apropo.ro/cotidian/social/hemofilia-distruge-copilaria-2705083

http://www.telegrafonline.ro/1211144400/articol/54390/tratarea_bolnavilor_hemofilici_ca_si_inexistenta_in_romania.html

http://forum.transilvaniaexpres.ro/viewtopic.php?p=3378&sid=f8dcbb4d44984311f5dcfc18a46fe101

http://www.gandul.info/societatea/80-dintre-hemofilici-sunt-infectati-cu-hepatita-din-cauza-tratamentului-primitiv-video.html?3932;2648252

http://www.stirilocale.ro/Barbatul_plecat_pe_bicicleta_la_Istanbul_pentru_a_atrage_atentia_asupra_hemofiliei_a_revenit_in_tara_IDN504273.html

http://stiri.acasa.ro/articole/societate/80-dintre-hemofilici-sunt-infectati-cu-hepatita-din-cauza-tratamentului-primitiv

http://realitateacovasneana.ro/news/news.php?item.67.5

http://www.telegrafonline.ro/pdf/16cd98984d7dd5825c2bfd9b8ec9fd0f.pdf

http://www.presaonline.com/stire/barbatul-plecat-pe-bicicleta-la-istanbul-pentru-a-atrage-atentia-asupra-hemofiliei-a-revenit-in-tara,287029.html

http://www.evenimentulzilei.ro/articole/detalii-articol/803817/O-mie-de-kilometri-pe-bicicleta-pentru-fiul-hemofilic/

http://www.romedic.ro/stiri-medicale/Stiri_interne_0568/Cu_bicicleta_la_Istanbul,_in_sprijinul_bolnavilor_de_hemofilie_06204.html

http://www.stiripescurt.ro/stiri/o-mie-de-kilometri-pe-bicicleta-pentru-fiul-hemofilic/42132.html

http://cultural.srr.ro/arhiva/arhiva3.shtml?station=2&year=2008&month=5&day=19

http://evz.ro/articole/detalii-articol/2972/Baiatul-care-nu-are-voie-sa-se-joace/

http://www.alaturidevoi.ro/ro/php/afis_articol.php?id=1356&afiseaza=da

http://realitateacovasneana.ro/news/print.php?news.427

http://www.ziuausa.com/display.php?id=8807&data=2008-05-21

http://www.9am.ro/stiri-revista-presei/a/92682/a

http://www.brasovultau.ro/index.php?pag=nw&id=8118&p=un-brasovean-va-parcurge-1000-de-km-pe-bicicleta-pentru-a-protesta-impotriva-hemofiliei-video.html

http://www.agenda.ro/images/editions/6/631_6267.pdf

http://www.radiomures.ro/ro/stiri/stiri.php?year=2008&month=05&day=20

http://www.sanatateatv.ro/?actiune=read&id=862

http://www.medik.ro/info-medical/Un_tratament_mai_bun_pentru_hemofilici!.php

http://www.buletindestiri.info/tratarea-bolnavilor-hemofilici-ca-si-inexistenta-in-romania/

http://www.stirilocale.ro/covasna/O_mie_de_kilometri_pe_biciclet_pentru_fiul_hemofilic_IDN478965.html

http://www.ziare.com/Cu_bicicleta_pana_in_Turcia_ca_sa_si_salveze_fiul-212902.html


Hungarian:
http://www.szekelyhirmondo.ro/article.php/Kisfiáért_kerekezik_Isztambulig/6808/

http://pluszportal.ro/web/index.php?option=com_content&task=view&id=1925&Itemid=2

http://www.3szek.ro/modules.php?name=3szek&id=6519

http://www.erdely.ma/jotekonysag.php?id=36763

http://umsz.manna.ro/tarsadalom/bringan_a_hemofilia_kezeleseert_2008_05_20.html

http://www.erdelyfm.ro/hirarchivum.php?nap=2008-05-19

http://www.erdely.ma/eletmod.php?id=36710

http://www.szekelyhirmondo.ro/article.php/Remény-a-hemofíliásoknak/7604/

Turkish:

http://www.yesilyurtgazetesi.com/detay.asp?hid=4406

http://www.haber7.com/haber.php?haber_id=322330

http://haber.mynet.com/detay/saglik/Kanamaya-dur-demek-icin-geliyorlar-/26Mayis2008/X1211790499937

http://www.haberler.com/istanbul/

http://www.arabul.com/haberana.aspx?id=411255&AspxAutoDetectCookieSupport=1

http://www.habersaglik.com/default.asp?Act=Dt&CatId=1&NwId=78651

http://www.ozgurhaber.com/hasta-oglu-icin-pedal-ceviriyo-2172491/

http://www.haberler.com/hemofili-hastasi-oglu-icin-pedal-cevirecek-haberi/

http://www.eczacidergisi.com/

http://www.trakyanethaber.com/yeni/haber.asp?id=11008

http://www.habervar.com/

http://www.cagdaskitap.netteyim.net/haber/Spor/hemofili_hastasi_oglu_icin_pedal_cevirecek-haberi-12270.html

http://www.gazeteint.com/news_detail.php?id=2521

http://haber.eglenceseli.com/5680/hemofili_hastası_oğlu_için_pedal_çevirecek.html

http://www.sporveskor.com/arsiv.asp?katID=12&s=1

http://www.harbiforum.net/guncel-haberler/57883-hemofili-hastasi-oglu-icin-pedal-cevirecek.html

http://www.cagdaskitap.netteyim.net/haber/Spor/song%20dan_kartal%20a_mesaj_var-haberi-12248.html

http://www.haberler.com/romanyali-laszlo-kiss-oglu-icin-bisikletle-turkiye-haberi/

http://www.yesilyurtgazetesi.com/detay.asp?hid=4406

http://www.aksam.com.tr/haber.asp?a=119290,3

English:

http://www.kelleycom.com/blog/labels/Kiss%20Laszlo.html

http://www.wfh.org/2/docs/Publications/Hemophilia_World/HW_April2008_EN.pdf

2008. május 31., szombat

Durusu-Istanbul


Our Turkish friends come and accompanied us with their car on our last kms. We had an another surprise too: Turkish bikers were there for us before Istanbul! And when we arrived to the hotel..... the Turkish hemophiliacs were waiting and applauding us. It was very hard for me to keep my tears......

Thank you! Thank you for all!
Special thanks for the sponsors:
Novo Nordisk
Orzan Spedt SRL
Biotest Hungary
Hemophilia Society of Turkey
Romanian Hemophilia Association
Hungarian Hemophilia Society
World Federation of Hemophilia
Red Cross Romania
Komenco SRL
Discgolf Austria
City Hall Sfantu Gheorghe
Terwa Romania SRL
Bike Kuckó Sfantu Gheorghe

Saray-Durusu-Karaburun


It was the most windiest day of them all. We started our trip at 6 o clock in the morning. Strong headwind. We were riding with14-15 km/h! And somethıng unusual: it was cold all day!
At Karaburun we met again the Black Sea. Our accomodation was very close to the beach. I slept wıth the sound of the sea....

Kirklareli-Saray


Short but hard trip. Man, it s too hot here! On our way we met some bikers from Belgium. They did a trip around the Mediteranean Sea! It took about 2 years for them. We give to them our map of Bulgaria.

Malko Tarnovo-Kilklareli


From the silence of the forests we entered in country which impressed me with it's vitality. The people are so friendly! Even the car drivers salute us as if we are old friends.

Prımorsko-Malko Tarnovo


Forests-mountains-forests-mountains, I recommend this part of my trip to every biker. No cars, no men- just you and the nature. You can rest on the middle of the road, without any problem..... and the Veleka Valley is extraordinary! I noticed an interesting custom of the Bulgarians. They use the road indicators as targets for shooting.

2008. május 25., vasárnap

Burgas-Primorsko

Another hot day. We stopped at Sozopol. A beautiful place. We drink and ate somethıng, then back to bikes again! In Prımorsko we find accomodatıon. Then I was swimming in the Black Sea. It was a bit cold, but good, Edy didn't entered in.

Varna-Burgas


This day was the hardest of all untill now. We did 136 km! It was a very hot day with a very strong headwind. We had a lot of mountains to climb. At Banya we climbed up about 20 km. We arrived about 9 o'clock pm to Burgas. "Tired" is not the appropriate word for what I felt, but I saw beautiful places, Bulgaria is beautiful.
On our way we met Erhardt Krull, an interesting man, who went from Holland to Istanbul. He is 51 years old, but he is still very active.
In Burgas wewisited athe town after the accomodation. The population celebrated the Burgas' Days.

2008. május 23., péntek

Sumen-Varna


This was a relatively fast trip. We had backwind, but I m more and more tired. I feel these 600 km what I did. And today we had a very hot day, too hot for a "highlander". On our way we visited the "Stone Forest" from Varna. It was very beautiful, then we went on our bikes to Varna. We made our accomodation at a hotel. Then we we ate, visited the city and stayed on the beach. The Black Sea is cold, so I entered only to wash my leggs. Tomorrow we shall have an another hard day. We shall have to do about 120 km. Wow!!!!!!

Giurgiu-Sumen



This day it was very hard . It was raining. We started very late, but I was very happy, because Edy from Sfantu Gheorghe came to accompany me.

Bucharest-Giurgiu


This trip was very easy. Mostly because the bikers from Bucharest accompanied me. Their solidarity impressed me much. A Turkish TV took some interviews from us.

Bucharest




In Bucharest we did the press conference. I think that was very good. Then we went to the Ministry of Health. They received us. they were very kind. We gave to them the petition. We shall see what will happen......

2008. május 20., kedd

Pitesti-Bucharest


The morning starts with storm and lightnings. At 9 o'clock the sky become cleaner.
The weather become warmer.
I had problem with the wind, the nightmare of each biker.
I had headwind, so I went with 12-15 km/h in a plain place! I was demoralized. Then after Titu I met with the bikers from Bucharest, who come to help me to enter in Bucharest.
Suddenly I had new strenght, new power.
Bogdan, Florin and Ionica I never forget your kindness!

Brasov -Pitesti




I started the trip from the Piata Sfatului. The "cavalry'' accompanied me until Rucar. There were bikers from Sfantu Gheorghe and Brasov. Their support it means for me a lot. The mountains become less higher for me. I was very impressed that people who hasn't got anything in common with hemophilia, simply they wanted to help me! The weather was fine, and the mountains just beautiful! I was burned by the sun a bit.
More photos on: http://picasaweb.google.com/kkisslaci/BrasovPitesti

2008. május 19., hétfő

Sfantu Gheorghe-Brasov


Finally I started my trip! At our local Red Cross we organized our press conference. There were from the local and national newspapers and from the Duna TV. Then I said goodbye to my family and my friends. Then off we goo! Many bikers from Sf Gheorghe accompanied me on the first part of the trip. Then they left me at the border of Covasna County.
I arrived without any problem to Brasov. I made my accomodation at my relatives. After that I had 2 interviews with TVR1 and with a local TV station, then I met with the local hemophilia patients at the Military Hospital. It was a very emotional moment. Then we talked about their specific local problems.......and they have a lot! On this photo you can see some hemophilia patients from Brasov.
You can see more pictures on:
http://picasaweb.google.com/kkisslaci/SfGheorgheBrasov

2008. május 1., csütörtök

International Symposium in Sfantu Gheorghe


On 29Th of March our Covasna County Association organized in collaboration with the Romanian Hemophilia Association and Hungarian Hemophilia Society an international symposium called The Medical Care of the Hemophilia Patients in Hungary and Romania.In the opening Dr. Valentina Uscatescu (Fundeni Hospital) presented The Advantages of the Recombinant Factor Therapythen Daniel Andrei vice-president from the Romanian H. Association and Molnar Zoltan president of the Hungarian H. Society presented their national organizations.After that Dr Vaga Gabor vice-president of the HHS was talking about the Factor Supply in Hungary.Then Istvan Kovacs HHS youth leader presented The Formation of the Hemophiliac Youth Community in Hungary.Marcu George secretary RHA replied him with the presentation of the Clinical Center for Evaluation and Rehabilitation ''Cristian Serban''We finished our symposium with my presentation of the bike campaign: Help for Hemophilia.At the end everybody agreed that we learned a lot from each other and we shall cooperate and do projects together.
The symposium was sponsored by NovoNordisk.You can see photos on http://picasaweb.google.hu/kkisslaci/Szimpozion?authkey=YZY96yZrjbU

Starting the Project

January 27th 2008

Making this project is harder than I ever imagined to be. But I'm glad that I begin and hopefully God will help me to finish it.At first step I entered in contact with the Romanian Hemophilia Association and the Romanian Red Cross, then with the Bulgarian, Turkish, Hungarian Hemophilia Associations, after that with the World Federation of Hemophilia too. They approved my action.I shall go not only in the name of my Covasna County Section, but in the name of the Romanian Hemophilia Association! Their moral support and the others' means a lot for me.Now we are at the second step, which is fund raising and beginning the campaign in the media.We started with a press conference:http://www.libertatea.ro/index.php?section=articole&screen=stire&sid=195180 http://www.evz.ro/article.php?artid=337378 http://www.covasnamedia.ro/stiri/news.php?extend.3317 http://www.szekelyhirmondo.ro/article.php/Kisfiáért_kerekezik_Isztambulig/6808/http://pluszportal.ro/web/index.php?option=com_content&task=view&id=1925&Itemid=2http://www.3szek.ro/modules.php?name=3szek&id=6519Our local TV was there too, and Radio Targu Mures, a regional radio, mentioned the project in the news too. I think that we started a good campaign in the media.We are at the beginning of the fund rising.We have to move fast!

New Project: Help for Hemophilia!


1. Objectives :I shall go on a bike to the WFH Congress which will be held next year in Istanbul. The Romanian Hemophilia Association through this action wants to focus the public attention on hemophilia and to talk about our problems. I shall do 1089km in 14 days.
2. Justification: My younger son, Daniel has got severe hemophilia. He was diagnosed at the age of 1. Since then we faced with many problems through which I understood that I can’t manage alone Daniel’s situation. But after we entered in the association I realized that not only we have difficulties, that there are people who are in even worse situation. That’s why I decided to do this trip not only for my son, but for the whole hemophilia community.
3. Activities: During my trip I shall stop in each important town, no matter if it’s Romanian, Bulgarian or Turkish. There I shall meet the local hemophila associations and the local media too. Once arrived there in the name of our association I want to get in contact with other similar organizations to build common actions and develop a partner relationship over the medium to long term.
4. Duration and plan of action:
I shall do 1089km in 14 days.
17 May start from Sfantu Gheorghe to Brasov 32 km
18 May Brasov-Pitesti (via Bran) 133 km
19 May Pitesti-Bucuresti 113 km (via Leordeni, Titu)
20 May press conference in Bucharest
21 May Bucuresti-Giurgiu-Ruse 64+9 km
22 May Ruse-Sumen 112 km
23 May Sumen-Varna 93 km
24 May Varna Burgas 128 km
25 May Burgas-Primorsko 65 km
26 May Primorsko-Malko Tarnovo 78 km
27 May Malko Tarnovo-Kirklareli (Turkey) 53 km
28 May Kirklareli-Saray 68 km
29 May Saray-Durusu 77 km
30 May Durusu-Istanbul 36 km
31 May rest
1-5 June Conference!
5.Expected impact:
- to raise broad awareness of hemophilia not only in my country, but in other countries too.
- to show an alternative to people about how they can involve to help
-to provide fresh ideas and strategies for the youth about how they can spend their free time
6. Target group:
-Ministry of Health
- officials
- medical staff
- media
- ordinary people
7. Results:
-better medical assistance
- more medical products for treatment (an ordinary patient with severe haemophilia receives each month 1 dose monthly!)