What's New?

December 18, 2002 through January 7, 2003



In This Issue:Member NewsSite News Meetings New BookChat Info
Important!

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.



As another year rolls to a close, I'm so grateful that so many people are finding the Cushing's sites when they need them, so that they won't be as alone during diagnosis and surgery...and beyond.

I'm so proud of everyone who is getting out there, meeting other Cushies, checking up on them in the hospital, being there by phone. It's a wonderful family that we're creating.

I wish all my newfound Cushie family peace, good health, better times, a happy winter holiday - no matter what, or how, you celebrate - and the best New Year ever!

Birthdays:Other Celebrations:
• Nancy Cornish, December 18
• capecoddreams, December 22
• Kala, December 23
• Little"e", December 24
• Michele Allison, December 24
• Sarah_uk, December 24
• Adrienne, December 27
• aussie jude, December 31
• Christina, December 31



• Natalie F, January 1
• Shauna, January 2
• shabaz87, January 6
• KellyS, ultrasound, will finally get a peek at her baby, December 19
• Natalie, Joe and Jed, final adoption proceedings, December 20
• Mark (Preacher) and Molly, 29th Wedding Anniversary, December 21
• Christmas Eve, December 24
• Christmas, December 25
• Boxing Day, December 26
• Kwanzaa, December 26 through January 1
• New Year's Eve, December 31



• New Year's Day, January 1
• Epiphany, January 6

Next Newsletter will be January 8, 2003
Upcoming Surgery:Currently Recovering:
• tinydogpries, PSS, December 18
• Mark (Preacher), tumor biopsy, December 23
• Debbie, Adrenal surgery in December.
• Darren Shore, Pituitary surgery, in January, Montreal

Pituitary
• Erin
• Libby
• Judy
• Cookie
• Miri
• Jenny
• Jenny's NIH roommate

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

Other
• Leslie, torn cartilage
• Dori, gamma knife at UVA
• Cookie had a pacemaker installed November 4, and another pituitary surgery December 3
News!
• There are now 1131 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 http://www.cushings-help.com/newsletter_story.htm 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:
cris
and her daughter
cris has a prolactinoma
Her daughter is being tested for Cushing's
New Jersey
Mark Conn's DiseaseSterling Heights, Michigan

• 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 lynnemc@attbi.com. 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."

Fundraising:
PJ (Paula) is making some fancy holiday cards. Part of the profits will benefit CUSH. Pictures will be available on the site soon.



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."


Remember iGive.com...
...for all your holiday shopping, and all year, too.

iGive.com allows online stores to donate a percentage of their profit to running these sites at
no cost to you. So far, members have raised $217.82, 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 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 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: http://www.cushings-help.com/photo_gallery.htm

• Pictures from this year's convention are available in the Photo Gallery, http://www.cushings-help.com/photo_gallery.htm

• Pictures from last year's convention are available at http://www.cushingsonline.com/Convention1.htm

• 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.

New Book:
Official Patient's Sourcebook on Cushing's Syndrome: A Revised and Updated Directory for the Internet Age
James N. Parker (Editor), Phillip M. Parker (Editor) A Revised and Updated Directory for the Internet Age

This book is available as an eBook from icongrouponline, amazon.com or in paperbook form from barnesandnoble.com

Description

This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to cushing's syndrome (also Adrenal Cortex Adenoma; Adrenal Hyperfunction resulting from Pituitary ACTH Excess; Cushing's III; Ectopic ACTH Syndrome; Ectopic Adrenocorticotropic Hormone Syndrome), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on cushing's syndrome. Given patients' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms.

Synopsis
A comprehensive manual for anyone interested in self-directed research on Cushing's Syndrome. Fully referenced with ample Internet listings and glossary.

From the Publisher
This sourcebook has been created for patients who have decided to make education and Internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it also tells patients where and how to look for information covering virtually all topics related to Cushing's Syndrome, from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on Cushing's Syndrome. Following an introductory chapter, the sourcebook is organized into three parts.

PART I: THE ESSENTIALS; Chapter 1. The Essentials on Cushing's Syndrome: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Cushing's Syndrome;

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Cushing's Syndrome; Chapter 5. Books on Cushing's Syndrome; Chapter 6. Multimedia on Cushing's Syndrome; Chapter 7. Physician Guidelines and Databases;

PART III. APPENDICES; Appendix A. Researching Your Medications; Appendix B. Researching Alternative Medicine; Appendix C. Researching Nutrition; Appendix D. Finding Medical Libraries; Appendix E. Your Rights and Insurance; ONLINE GLOSSARIES; CUSHING'S SYNDROME GLOSSARY; INDEX. Related topics include: Adrenal Cortex Adenoma, Adrenal Hyperfunction resulting from Pituitary ACTH Excess, Cushing's III, Ectopic ACTH Syndrome, Ectopic Adrenocorticotropic Hormone Syndrome.

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 (http://sites.chatspace.com:8350/):

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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