The Quarterly Advocate
Nevoid Basal Cell Carcinoma Syndrome / Gorlin Syndrome Patient Advocate Newsletter
Spring 2000
Finally! The 1st issue of the Quarterly Advocate! Better Late than never.
I apologize for the delay. This is a result of losing my Father and my tenant in a short period of time. My Father passed on of heart failure at the age of 80 and my tenant passed of cancer throughout her body resulting in a stroke and passing on two weeks later. When the stroke occurred she was doing laundry and flooded out all three floors of my home so things have been hectic.
Enough about me lets get started. Since establishing the Website and assuming the screen name of my predecessor in January. I have been in touch with over 75 families affected with BCCNS/Gorlin Syndrome. The numbers are growing rapidly thanks to our friends across the pond Gorlin Group UK led by Jim Costello who was kind enough to place our information in his newsletter. You may subscribe to their great newsletter by sending an annual fee of 10 pounds ( about $17.50 American) to Gorlin Syndrome Group c/o Jim Costello, 11 Blackberry Way, Penwortham, Preston, Lancashire, PR1 9LQ, UK. He is a great guy doing an awesome job. Thank's Jim! They are having a convention in November and I am planning on attending, if anyone is interested in putting a group together let me know. I am trying to make a deal with Susan Charron who led us here in the US for some years, We hope she is doing grest and are thankful for the time and caring she has dedicated. I am posting her book for sale on our Website and am asking her to send a postcard to the existing members of the BCCNS Support Network now out of business, at my expense and I will even compensate her for her time. I hope she is inclined to do so. I am also looking forward to an alliance with other groups now forming here in the US. I will keep you posted on the growth of the group in future issues.
We have been listed on three different websites for Support of BCCNS/Gorlin Syndrome and are starting to get some response. I have registered the site with over 1500 search engines and this is helping our exposure dramatically. I have new software for creating Webpages and this will allow more exposure by not being on AOL Hometown ( not easy to find in most search engines ) I have a temporary Domain that I intend to use which is budcaruso.com, this was purchased for other purposes but will have to do for now. I have invested over $500.00 so far (not including $1,600 for a new PC when the old one crashed for the last time in February) and need to keep these expenses to a minimum (if I hope to stay married) everything I do is self funded since I do not have a not for profit or charity status for those who have been kind enough to offer donations to and get a tax break. My accountant informs me any donations at this time would fall as income to me and I have enough tax liability. I am aiming for the purchase of a different domain e.g.: gorlinadvocate.com in the next six months or so.
Those wonderful Italians were published in the New England Journal of Medicine in December 99 for completing trials using as topical Tazerotene treatment for the removal of BCCs Their study documents great sucess this may be a good option for you. Be sure to discuss it with your health care provider.
Dr. A. S. High of the Leeds Dental Institute UK informs me that they are due to be published in June 2000 in the American Journal of Surgical Pathology Part B ( Diagnostic Molecular Pathology) for a new method of determining the existence if BCCNS/Gorlin Syndrome by identifying a novel polymorphism in the PTC gene. Hopes are this is more accurate, faster and cheaper method of positive identification. I will post the information as soon as it comes my way.
Dr. Ervin Epstein San Francisco General Hospital is currently conducting clinical trials on another method of treating BCCNS/Gorlin Syndrome. The details are linked from the Website I am also in possession of an expanded article which I would be glad to snail mail to any interested parties. You must be able to travel to either San Francisco, New York or Miami every three months for three years. Like any other clinical trial protocol must be met in order to achieve approval for use in practice. We are fortunate that so much attention has been given to our cause in recent years. As far as I can tell there are more people looking for new treatments or a cure than actually have the Syndrome. Our participation is key if advancements are to come. You are encouraged to e-mail Dr. Epstein at Eepsteinjr@aol.com for details and to sign up. Lets help science help us.
Tired of sifting through 574,876 documents to find what you are looking for? Try this. On infoseek.com you can search only within the displayed documents. Try searching for "basal cell carcinoma nevus syndrome" (you will get the usual half million results) then narrow your search by selecting the option search within these results and search for "Gorlin" then do the same for your next criteria e.g.: seizures, eyes, jaw etc. this really cleans it up. Also try aj.com which will search 6 of the top search engines all at the same time! Good luck with it I hope this shortens your searches.
I have a family who has a 9 year old girl with the syndrome that would like to communicate with someone who is in or has been in the same circumstance. I am also looking for documents regarding cold sores or oral BCCs for a young girl. I know I have seen documentation but have not been able to lay hands on it. Anyone have these or seen documentation associating it with the syndrome I would appreciate it. Thanks to those who have taken the time to sign the guestbook on the bottom of the Website. There are only about 7 out of over 75 who have signed this. No one will call you or knock on your door but you may get an e-mail from someone looking to communicate with others sharing the syndrome. The beauty of the Internet is that you can be as anonymous as you wish to be. I can tell you from experience it is a great feeling to be able to help others in the same circumstance as yourself. We have to help one another this may also prove to be a great tool for lobbying approval of certain medications or procedures in the future. I have also had mediocre response to the patient survey. Again this can be completely anonymous but will surely prove to be valuable information for research. Please try to print this form and return it to me as soon as possible. I am sending this newsletter to you personally. It is the only way to maintain your privacy which is very important to me. It is however, a slow process sending this individually over 75 times! As we grow in numbers over the years this will become even more cumbersome. If it is OK with everyone I would like to send it as a group e-mail it would be so much easier to do it with one click as opposed to the current process. It is OK if you do not wish to have your e-mail on a group list I will still send it individually. Please let me know sometime in the next 60 days if you do not wish to have your screen name on a group list. If you wish to be taken off the list just let me know and you will no longer receive the newsletter.
I have recruited my Mohs Surgeon to submit an article describing the Mohs technique and the benefits of the same. I am also requesting the genetics department to give us a laymen's outline of the genetic makeup and how DNA testing is done and why it takes so long to obtain results. I would like to run Bio's on our members monthly. please send a photo and a short bio on yourself for submission in future issues! Please include a brief medical history as well as your methods of dealing with the Syndrome as well as personal info like hobbies avocation etc.
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