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What's New?

January 22, 2003


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In This Issue:Member NewsSite News Meetings In the Media Clinical TrialsChat Info

Please read the chat directions below, so you're ONLY in the Cushing's Room, not both Cushing's and Power Surge. Many people end up being in both rooms, instead of only one.

This week's Power Surge guest will be of great interest to anyone who posts or reads the new Monday's Fitness, Weight Loss And Support Group. Here's more info on this chat:

Thursday Power Surge Live! Guest Chats
January 23, 9 PM, ET

Julia Griggs Havey
Need Motivation for Weight Loss?
Learn Weight-Loss Secrets

Julia Griggs Havey
Julia Griggs Havey tried every get-thin-quick gimmick and nothing worked. She eventally dieted her way from a size 8 to a 290 pound size 24. At 29, she resigned herself to a matronly figure and plus-size clothing. Then, one fateful day, Julia received an anonyous note informing her that her husband was having an affair. It was just the wake-up call she needed. From that moment on, she changed her attitude and took charge of her life. Fifteen months after the poison pen letter, she had divorced her husband, changed jobs, lost over 130 pounds and later married and was crowned Mrs. Missouri.

Julia shares her inspirational story and weight-loss secrets in Awaken The Diet Within: From Overweight To Looking Great - If I can Do It, So Can You. Julia Griggs Havey is a motivational speaker and columnist for She also owns The Health and Wellness Institute with her husband in St. Louis.

Enter the Chat with Julia Griggs Havey

Next Online Newsletter will be Wednesday, January 29
read archived issues here.
Birthdays:Other Celebrations:
• Searching5, January 22
• BilliFG, January 24
• barnhillb, January 28
• Stefanie, January 27
Tom and MaryO, 30th anniversary 
Upcoming Surgery:Currently Recovering:
• Cherri in AL, Pituitary surgery, February 18, Vanderbilt

• Jaime, Pituitary surgery at UVa, March 10

• Linda P. (tinydogpries)
• BrendaC
• Darren Shore
• Erin
• Libby
• Judy
• Cookie
• Miri
• Jenny

• Suzanne
• Debbie
• Kathie Mcconnell (kamaroon)
• Denise
• Lora
• Julye
• Joyce
• Deborah's son, Curtis
• Searching5

• Jennifer (Jennifurlii), Sleep Apnea
• Leslie, torn cartilage
• Dori, gamma knife at UVA
• Cookie had a pacemaker installed November 4, and another pituitary surgery December 3. She also returned to the hospital, in Florida, after another incident.
• New on the Site: Add your own doctor to the Helpful Doctors List. This list is getting so large that it's splitting into USA, California, and Non-USA pages, with more to come, as more doctors are added. The most recent doctor added was from Dubai, United Arab Emerites.

• The newest board is Monday's Fitness, Weight Loss And Support Group. Help keep (or start!) those New Year's Resolutions on this new board

• There are now 1193 members on the Message Boards

• 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 A no-obligation free sample of the CUSH Organization Newsletter is also available from that same link.

• A list of Current CUSH Organization members is available here..

Newest Bios:
To add or edit your bio, please click here.
Carla Carla has updated her bio. The Pas, Manitoba
Testing for pituitary Cushing's New Britain, CT
Sarah Adrenalectomy Dubai, U.A.E.
Suzanne BLA, January 16, 2003
Unsuccessful pit, April 1999
Sarasota, FL

• 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 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."

Decorative Candles:
Julia (Spencer's Mom) is beginning to make food oriented candles - shaped like sundaes, pies, and other desserts. She's even trying to making a candle in the shape of the CUSH pin!

Watch for more infomation about this new CUSH Fundraiser.

Cape Cod Candles:
Lynn in Va has an idea for a CUSH fundraiser. Her friend Sherri has been a Party-Lite Candle consultant for many years. The candles have several different scents/colors to choose from: Cinnamon Stick (Brown), Raspberry/Thyme (raspberry), Mulberry (Mulberry), Ocean Mist (Royal Blue), Bayberry (Sage), Lime/Cilantro (light sage), Honeydew (Mint), Pear / Basil (Yellow), Vanilla (Ivory). There is an optional lid and a platter to go underneath.

These would make terrific Secret Someone gifts and you'd be helping CUSH out at the same time!

The candles are all pure Cape Cod candles. The total cost is 15.00 per candle including shipping/handling. Sherri has offered us her commission, $3.00 for each candle that is sold, to go to our CUSH Organization.

For an order form, please email or download here in Excel format.

Please send checks with orders to:
Sherri Blakeman
7808 Knollwood Street
Brandywine, MD 20613

You may also email orders to and mail the checks to her.

Many thanks to Lynn and Sherri!

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."

... all year round. allows online stores to donate a percentage of their profit to running these Cushing's Support sites at no cost to you. So far, members have raised $219.95, and it hasn't cost them a cent.

Now through January 31st, is giving away FREE $5 donations for each new member who joins iGive & shops within 45 days!

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 Local Meetings:
• Shauna has been busy setting this up...CUSH is proud to announce that we are planning a meeting for October of 2003 in beautiful Portland, Oregon.

We have arranged to have Dr. David Cook of Oregon Health Sciences University speak to our group. Dr. Cook is an Cushing's expert and we are honored to have him speak.

We've added another speaker (thanks Cookie!), a neurosurgeon who works with Dr. Cook's patients. His name is Dr. Johnny Deleshaw, and he's the one who performed Kelly's surgery.

We are also arranging to have additional speakers, including (hopefully) a neuropsychologist and a gynecologist, to help us with all that goes with Cushing's Syndrome.

We are tentatively looking at booking our rooms at the Embassy Suites, Portland Airport location. The cost for a single room suite is $109, about $130 after taxes. Your room will include a breakfast. The rooms are very nice and spacious. We will have both smoking and non-smoking available.

The dates will be: October 16, 17 and 18th, with departure on the 19th. Our schedule will be as follows:

Thursday: General meeting of CUSH, one hour CUSH officers meeting, evening cocktail hour.

Friday: Conference with our speakers and a catered lunch, courtesy of CUSH. Dinner out that night (we'll provide selections).

Saturday: FUN!! We're looking at either a boat ride down the Columbia Gorge or possibly at train ride down the Gorge.

Sunday: Hugs, tears and goodbyes

There will be a small charge (donation, tax deductible) to attend the conference, but we are sure it will be worth every cent. Many of us are putting in lots of work to make this an unforgettable, yearly event. We will invite you to tell your doctors about this - YOU NEED NOT BE A MEMBER OF CUSH TO ATTEND. We will have materials available for you to post and give your doctor to promote this event. It will be very professional and we will have some fun events planned.

Here's what we need from you before we sign a contract:

If you would like to attend please let us know if you'd be willing and able to book a room. Remember, you can always share a room. We will be committed to 20 rooms per night, and need to fill all rooms.

If you're in the local Portland area and want to attend, but not take a room, please let us know.

We are setting a date after which attendance will be restricted. Tentatively, we are looking at until June for Conference attendance and July as the last time to book a room. All of this is subject to change, as we're still ironing out details.

Please let us know ASAP if you believe you can attend and if you'll need a room. Also, if you can indicate if you believe this is 100% firm, that would be great. We will be signing a binding contract that could cost CUSH more money than we have if people don't show up. We're trying to avoid that by getting your thoughts and attendance.

Thanks to everyone - this is going to be one great conference!

• Friday and Saturday, April 1-3, 2004. Pituitary Days Convention for Doctors and Patients at UVa, Charlottesville, VA. More information here. There will be many people from the message boards there. CUSH will have a meeting during this time, as well.

• New pictures in the Photo Gallery from the last CUSH meeting in Columbus, Ohio. Erin took these:

• Pictures from this year's convention are available in the Photo Gallery,

• Pictures from last year's convention are available at

• Tentative Atlanta area meeting. Carol Perkins, former model - Victoria's Secret, Harper's Bazaar, Vogue, and the founder of Harry Barker in Savannah - has agreed to share her inspiring story. More information, as it becomes available, or check here

• More upcoming local meetings are listed here.

• To list other local meetings, please send an email.

In the Media:
The Pituitary Network Association (PNA) and the American Medical Association (AMA) will hold a joint News briefing on Pituitary/Hormonal Disorders at the Millennium Hotel Broadway in New York City from 9 a.m. to 2 p.m. on January 23, 2003.

We are extremely pleased to present some of the leading scientists in the world of Pituitary Medicine.

The news briefing intends to raise awareness of the plight of the millions of people struggling with hormonal imbalances caused by pituitary tumors, trauma and disease. We will release information from studies revealing that one out of every five people---men, women and children---are affected.


1 Yank Coble, Jr., M.D., President of the American Medical Association

2 Shereen Ezzat, M.D., Professor, Department of Medicine, University of Toronto, Ontario and President of the PNA.

3 Sylvia L. Asa, M.D., Ph.D., Senior Scientist, Ontario Cancer Institute, Cancer Informatics Division, University Health Network, Toronto, Ontario

4 Hossein Gharib, M.D., President of the American Association of Clinical Endocrinologists (AACE); Professor of Medicine, Mayo Medical School, Rochester, Minn.

5 Edward J. Laws, M.D., University of Virginia, President of the International Federation of Neurosurgical Associations and Chairman, Board of Regents of the American College of Surgeons.

6 Dan Kelly, M.D. Associate Professor of Neurosurgery UCLA School of Medicine. Director, UCLA Pituitary Tumor and Neuroendocrine Program

7 George Chrousos, M.D., Chief, Pediatric and Reproductive Endocrinology Branch National Institutes of Health, NICHHD, Clinical Center

8 Lorraine Fitzpatrick, M.D., Professor of Medicine, Mayo Clinic

9 Paul Ladenson, M.D., Professor of Medicine, Johns Hopkins

10 Robert Knutzen, CEO/Chairman of the Pituitary Network Association

... and our own, Sharm!
Clinical Trials:
CenterWatch Clinical Trials

CenterWatch also provides educational materials on clinical trials for patients, care-givers and health consumers. To view a more detailed description of these resources, please

1) Phase 2 Study Assessing AMG 162 in the Treatment of Women with Low Bone Density. This study is being conducted in:
Beverly Hills, CA
Laguna Woods, CA
Los Angeles, CA
Palo Alto, CA
Rancho Cucamonga, CA
San Diego, CA
San Francisco, CA

2) Have you been given a prescription for a cholesterol-lowering medication? This study is being conducted in:
Various Cities, CA

3) Phase 2 Study Assessing AMG 162 in the Treatment of Women with Low Bone Density. This study is being conducted in:
Lakewood, WA
Duncansville, PA
Wyomissing, PA

4) High Cholesterol. This study is being conducted in:
Philadelphia, PA

5) Depression. This study is being conducted in:
East Providence, RI

6) Phase 2 Study Assessing AMG 162 in the Treatment of Women with Low Bone Density. This study is being conducted in:
Elmsford, NY

7) Have you been given a prescription for a cholesterol-lowering medication? This study is being conducted in:
Various Cities, NY

8) Phase 2 Study Assessing AMG 162 in the Treatment of Women with Low Bone Density. This study is being conducted in:
Cincinnati, OH

9) Luteinizing Hormone in Polysystic Ovary Syndrome: Impact of Obesity. This study is being conducted in:
Boston, MA

10) Phase 2 Study Assessing AMG 162 in the Treatment of Women with Low Bone Density. This study is being conducted in:
Bethesda, MD
Kalamazoo, MI

Through a collaboration with Veritas Medicine, you can also be actively matched to ongoing clinical trials. Veritas Medicine's Personalized Trial Matching service enables you to find clinical trials that match your specific medical and geographic search criteria.

At this time, Veritas Medicine is actively matching patients to clinical trials in the following areas:

Depression section:

Cholesterol Disorders section:

Osteoporosis section:

Additional Educational Resources:

Informed Consent: A Guide to the Risks and Benefits of Volunteering for Clinical Trials

A guidebook that helps patients, family members and advocates make more informed decisions before giving their consent to volunteer for a clinical trial and during their participation. For more information, visit:
New Medical Therapies Reports

A series of concise, easy-to-read reports filled with information on drugs in development and clinical trial activity for specific illnesses and medical conditions. For more information, visit
Volunteering for a Clinical Trial Brochure
A handy and quick reference pamphlet for understanding the clinical trial process and what to expect as a clinical trial volunteer. For more information, visit
Online Chats:
Please join us in the Chat Room (click here, and then continue on to TheCushingsChat. See directions below.)

The next scheduled chat is TONIGHT at 9 PM, Eastern, when we will discuss Cushing's, troubles with diagnosis, symptoms and much more.

Important! The chat room has been updated and will look different to folks who have been around before - there are some new features, and some of the old ones have moved to a new place, so it might take a little getting used to. People who do not have Java on their browsers may use another version of the chatroom.

Please be sure to continue on to TheCushingsChat. While you're in the Power Surge room, click on the black "X" at the top of the room ( Not the X in the blue circle) This will put you in the area where you can see all the rooms listed. You'll see the one to the list that says TheCushingsChat. Double click on that name to get into the room.

People in the main Power Surge room may be talking about menopause and will have no clue what Cushing's is. They will not be able to help in any way....unless you have menopause issues to discuss, too! If you do have menopause issues, be sure to return on Thursday nights at 9 eastern for wonderful information, guest speakers and camaraderie.

Not sure how these times relate to where you are? Here's a Time Zone Converter

Directions: When you enter the Chat Room (

1 Enter a nickname for yourself (it would help everyone if you use the same name you use to post...but it's not necessary). NO Password is required. Your password from the boards will not work, unless you register it after you are in the chatroom. More features are available when you are registered, but it is entirely optional. If your chosen name doesn't work, it means that someone else has registered it. Pick another name and try again.

You may also choose a font size at the sign-in window, under "Options".

2 Push the "LOGIN button"

You will be in my friend's Power Surge Chat Room.

3 On the top, left side, you will see a tab that says "Rooms". Click on that and there will be a list which includes the TheCushingsChat. Click on the name to get in.

I hope to see you tonight!


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