• In an upcoming Guest Chat, we will have Barbara Craven, Ph.D., RD, LD. Barbara's link to us is that she has had Cushing's. Like many, hers was intermittent and symptoms accumulated over many years before she was diagnosed. In November of 2003 she underwent transphenoidal surgery and her entire pituitary was removed. Many of the symptoms you have experienced or are experiencing, she has also. Many of us met Barbara at the UVA Pituitary Days Conference in April, 2004.
Barbara will answer our questions about natural therapies and diet that helps alleviate symptoms and manage weight in Cushing's disease. More information will be on the site and in a future Newsletter.
Meetings in Australia
he Australian Pituitary Foundation Ltd is concluding Pituitary Awareness Week, 31
July - 8 August 2004. Click here for meetings and events
• Dr. Roberto Salvatori at Johns Hopkins has received a large grant from NIH to study the
consequences of lack of growth hormone and it's affects on heart function, bone density, muscle strength, and fat metabolism. It is a wonderful study but he has run into a problem with a delay in
receiving the funding. It apparently had to go through the Brazilian Gov. which is where the study will take place in a population of dwarfs that genetically have no growth hormone (a perfect study sample).
Receipt of the funds may be delayed anywhere from three to six months.
The study was scheduled to begin July 1 and an Endocrinology fellow, Dr. Danilo Fintini from Italy, is hired to do the research and begin July 12th, however there are no funds available yet to pay him. NIH grants require that the work be completed within a framework of time. To delay the project may cause a loss of the grant.
Any donation is tax deductible and greatly appreciated. $11,210 will be needed for the first three months and then another $11,210 for the next three months. This research when completed will help patients that are hypopituitary be treated with greater knowledge of the problem and insights in to how to help them recover strength, normal heart function and fat metabolism.
Thank you for your consideration in this matter. Please do not
hesitate to ask for more verification or information about the project. I look
forward to hearing from you soon.
• The new message boards are open! Not only are the boards completely different, but they're on a new server, with a new URL. So far, everyone has enjoyed all the wonderful new features. Check out the new boards at http://boards.cushings-interactive.com/invboard/
For people who were members of the older boards, they will be open as archives for a few more days, if you have a favorite post you would like to print out or repost on the new boards.
A new Photo Gallery has been added, as well as other enhancements to the boards.
The Board Home, accessable from a link at the top of the Message Boards is one of my favorite new features.
• A new chatroom is available through http://www.cushings-help.com/chatroom.htm. Since this is our own room, you won't need to go into another area after first logging in. YOu'll be right there! The very first time you go in, you will have to register for this chat. Although you may use your user name and password from the message boards, you will still need to register those before being allowed into the room. This room is always open, and has convenient links so that you can get needed information while you're chatting.
• We welcome your articles, letters to the editor, bios and
Cushing's information. Submit a Story or Article to
either the snailmail CUSH Newsletter or to an upcoming email
newsletter at
http://www.cushings-help.com/newsletter_story.htm
• If you've been diagnosed with Cushing's, please
participate in the
Cushing's Register »
The information you provide will be used to create a register
and will be shared with the medical world. It would not be used
for other purposes without your expressed permission. Note:
This information will not be sold or shared with other
companies.
Lynne Clemens, Secretary of
CUSH Org is be the
person responsible for the creation of this register. If you
have any questions you may contact her at
lynnecush@comcast.net. You
do not have to be a member of CUSH to fill out this
questionnaire, as long as you are a Cushing’s patient. We do not
believe that the world has an accurate accounting of Cushing’s
patients. The only way to authenticate accuracy is with actual
numbers. Your help will be appreciated. Thank you."
Online Chats:
Please join us in the Chat
Room TONIGHT at 9 PM Eastern.
The new chatroom is available through http://www.cushings-help.com/chatroom.htm. Since this is our own room, you won't need to go into another area after first logging in. You'll be right there!
The very first time you go in, you will have to register for this chat. Although you may use your user name and password from the message boards, you will still need to register those before being allowed into the room.
This room is always open, and has convenient links so that you can get needed information while you're chatting.
