What's New?

July 14, 2004
To read the HTML version of this newsletter, or the archives, on the Internet, please click here.

In This Issue: Happenings Site News Meetings Chat Info

We have both new message boards and a new chatroom! Read all about them below.

Next Online Newsletter will be Wednesday, July 21
read archived issues here »
• 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.

• Introducing Leksell Gamma Knife(R) 4C for Treatment Solutions in the Brain

Leksell Gamma Knife(R) 4C: the most successful radiosurgery weapon in the fight against brain disorders

ATLANTA, July 1 /PRNewswire/ -- Leksell Gamma Knife(R) 4C* is the fourth generation of the most successful radiosurgery weapon in the fight against brain disorders, with enhancements designed to improve workflow, increase accuracy and provide integrated imaging capabilities. The integrated imaging, powered by Leksell Gamma Plan(R), offers users an unprecedented ability to integrate images from multiple sources to achieve the most accurate treatment capability ever. These images can also be exported on a CD-ROM, so the referring physician can receive pre-op or post-op images for reference and follow-up.

To view the Multimedia News Release, complete with video and Hi-Res images, go to: http://www.prnewswire.com/mnr/elekta/12463/

The new features and advancements on Leksell Gamma Knife(R) 4C are both visually appealing and increase functionality. Operators now have the flexibility to view planning information on both sides of the couch, and the redesigned operator console is more intuitive and easier to use. The faster, more efficient helmet changer and robotic Automatic Positioning System(R) streamline operations and reduce treatment time.

*Leksell Gamma Knife(R) 4C and Leksell GammaPlan(R) 4C are works in progress and are not yet available for sales or distribution in the U.S.

Setting the Standard in Radiosurgery

Leksell Gamma Knife(R) remains the most proven means of performing intracranial stereotactic radiosurgery, and is the single most trusted and utilized solution for treating brain disorders without invasive surgery. Over 250,000 patients have been treated using Gamma Knife(R) surgery and there are 2,000 peer-reviewed published papers. Patients and physicians prefer the convenience and efficacy of a single dose achieved with clinical confidence using Leksell Gamma Knife(R).

Leksell Gamma Knife(R) is part of a complete and successful practice, offering a proven business model that reduces risk while allowing centers to reach profitability faster. Leksell Gamma Knife(R) is installed in 200 clinics worldwide, and all original sites are still operating. With increasing patient volumes and a growing number of indications treatable using Gamma Knife(R) surgery, centers are finding their investment in Leksell Gamma Knife(R) to be sound. They also benefit from being perceived as a leader both in technology and thought leadership, as well as additional income from performing associated procedures.

Gamma Knife(R) surgery is used for a variety of neurological disorders, including AVMs, vestibular schwannomas, meningiomas, pituitary tumors, trigeminal nerve targets and brain metastases. Research is being conducted on other possible uses of Leksell Gamma Knife(R), such as treating epilepsy, Parkinson's disease and uveal melanoma.

Fighting Serious Disease

The strength of Elekta's diverse and specialized treatment solutions provides a solid market position, which is being strengthened with the introduction of leading edge, emerging clinical applications of technology. With a robust pipeline of new orders for Leksell Gamma Knife(R) and Elekta Synergy(TM), Elekta has proven that it is a company that will continue to make a difference in the lives of patients today and in the years to come.

Elekta is a world-leading supplier of advanced and innovative radiation oncology and neurosurgery solutions and services for precise treatment of cancer and brain disorders. Elekta's solutions are clinically effective, cost efficient and gentle to the patient. The company's North American headquarters are located in Atlanta and corporate headquarters are in Stockholm, Sweden. For additional information about Elekta, please visit www.elekta.com

Web site: http://www.elekta.com

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.

For more information about this study and Dr. Salvatori, in Word format: please click here to download.

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 until the last week of July, if you have a favorite post you would like to print out or repost on the new boards.

The 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.

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.

• 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

Newest Bios:
To add or edit your bio, please click here »
Elizabeth (earose) Elizabeth (earose) had
Endoscopic Transphenoidal Surgery June 9, 2004, but is not cured.
Coeur d'Alene, Idaho
Holli J Updated
Holli J is not yet diagnosed.
Hollie Hollie had a tumor on her left adrenal gland removed in January 2004 Elkton, VA
Lori B Lori B is not yet diagnosed Midland, Ontario, Canada
Sam Sam had cyclical, adrenal Cushing's. Her tumor was removed April 8, 2003.
The link to her NIH research study can be found in her bio.
Snohomish County, WA

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."


Burden Bears:
Natalie has been collecting some money for CUSH.

She says: "I am making "Burden Bears" and selling them at my craft shows and I am donating $1 from each sale... ...So far I have collected about $20 for us."
The Cushing's Store
for all kinds of Cushing's Labeled clothing, coffee mugs, totebags and much more. Great for your endo or Secret Someone.

Remember iGive.com...
... all year round.

iGive.com allows online stores to donate a percentage of their profit to running these Cushing's Support sites (the message boards, http://www.cushings-help.com, http://www.CUSH.org, http://www.cushings-support.com and http://www.cushingsonline.com) at no cost to you. So far, members have raised $297.57, and it hasn't cost them a cent.

See the list of participating merchants »


Thank you so much for your support.

Thanks to all of you for these clever Fundraising ideas.

CUSH can always use funds to help us all, by spreading the word and helping others. What can *you* do to help CUSH?


Upcoming Conventions, Meetings and Seminars:
CUSH is proud to announce the Convention for October, 2004 in Nashville, TN. Dr. Lewis S. Blevins will be the keynote speaker of the 2004 CUSH Convention at Vanderbilt Ingram Cancer Center, Preston Research Building, Nashville, TN. Dr. Scott C Isaacs will also be among the speakers. Dr. Issacs' topic will be "Coping With Cushings Through Diet and Lifestyle". More info here »
Registration is due now! More information here: CUSH Conference, October 22, 2004

Sign up for notification of local meetings. You need not be a CUSH member to participate.

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.

I hope to see you tonight!


Cushing's Help and Support at http://www.cushings-help.com
Cushing's Message Boards at http://boards.cushings-interactive.com/invboard/
Subscribe and Unsubscribe: Cushing's Newsletters and Chat Reminders http://www.cushings-help.com/aim.htm#reminder


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E-mail: CushingsSupport@aol.com
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