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New Affiliate in Argentina
Translated by Myriam Gorospe, Ph.D.
Greetings to all VHL families. My name is Carlos Alberto Fredes. I am 45 years old, married and with 3 daughters, and I have VHL. I am President of the Association of von Hippel-Lindau families in Argentina (AAF-VHL). Our Association was created by a group of friends and families, all of whom did not hesitate to join forces to work for VHL families. The Association base office is located in the city of Necochea, about 650 Km (about 400 miles) southeast of the city of Buenos Aires, on the Atlantic Ocean coast.
In our country, those affected with VHL have the same problems as those with VHL in other countries: poor information and lack of knowledge on the part of the medical and scientific communities about VHL. Added to this, we have major legal hurdles; for this reason, since its formation, the Association has been fortunate to have Dr. Daniela Cangiano, a specialist in Civil Law, as its vice president. She fulfills the duty of working for the rights of those affected with VHL and their families, from medical care to employment issues. We are also privileged to have Dr. Jorge Omar Villalba, a physician and political advisor.
At present, we are working with national and provincial government representatives in the arduous task of disseminating information about VHL. First, we requested that they print the VHL Manual, brochures, and check-up schedules. Deputy Horacio Piemonte presented these requests to the Chamber of Deputies of the province of Buenos Aires. In addition, we asked that the Executive branch, implement a wide information campaign to spread knowledge about VHL.
This information campaign will include the first conference devoted to disseminating information on VHL in Argentina. The dates have not been confirmed, but we anticipate holding them in March or April 2010. They will be directed to physicians, nurses, special education teachers, affected persons, and the general public. They are supported by Necochea city government, sponsored by Dr. Jorge Omar Villalba, Pediatrician and legal counselor to Deputy Horacio Piemonte, who after learning of our situation, offered us all of his skills and expertise, and has been working dilligently with us since. It is important to note that Dr. Jorge Omar Villalba has previous experience working with other Associations and has previously collaborated in disseminating information of other rare diseases, underscoring not only his caring personality, but also his solidarity with and commitment to our Association.
We have also requested from the Chamber of Deputies, both national and from the Buenos Aires province, the designation of one public hospital of reference, with a multidisciplinary team to manage in an integrated manner the health care of persons affected with VHL and their families, including those who have social coverage as well as those who do not. This public hospital of reference will cover the costs of tests and medical treatment, so that everyone with VHL may have the best possible medical care.
We have requested from our Congress the creation of a VHL Tissue and Tumor Bank, to which all persons with VHL can contribute and thereby advance VHL Cancer Research. We have also requested the creation of a fund for the study of DNA for those with VHL and their families.
We plan to sign agreements with hotels, so that when a public hospital of reference is designated, the persons affected will be able to receive low-cost room and board. Using a similar principle, we want to make available our region and its hotels to VHL families, so that they can enjoy our touristic cities and coasts, while resting and relaxing.
We also plan to secure funds for our physicians and scientists to attend international symposia. We also hope to create, in the near future, a regional structure, given the size of our country.
As an individual with VHL and as President of the AAF-VHL, I extend my appreciation to several people who have been extremely supportive of me since my diagnosis one year ago: to Mrs. Joyce W. Graff, VHL Family Alliance Director, to Dr. Myriam Gorospe, to Ms. Jesusa Martínez Gómez, President of the Spanish VHL Family Alliance, and to Dr. Karina Villar Gómez de las Heras, Vice president of the Spanish VHL Family Alliance. I also thank Dr. Jorge Omar Villalba for all of his help and efforts as we work to disseminate information about the VHL Syndrome. My thanks also to my family, my friends, and all of those people who help and support us in one way or another, every single day.
We know that the work ahead will be hard and we will encounter hurdles along the way. We may be slowed down, but we will not give up, since we have a mission to fulfill: to work on behalf of all of those affected by VHL and of their families, so that we will improve the quality of life and dignity of those living with VHL, and so that we leave a mark not because of what we did, but because of what we were.
Many thanks to all.
Carlos Alberto Fredes, President (AAF-VHL)
As printed in the VHL Family Forum 17:3, October 2009. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org. |
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