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!
| 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
Jenny's NIH roommate
Kathie Mcconnell (kamaroon)
Deborah's son, Curtis
Leslie, torn cartilage
Dori, gamma knife at UVA
Cookie had a pacemaker installed November 4, and another pituitary surgery December 3
| 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..
and her daughter
|cris has a prolactinoma
Her daughter is being tested for Cushing's
|Mark ||Conn's Disease||Sterling 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 firstname.lastname@example.org. You do not have to be a member of CUSH to fill out this questionnaire, as long as you are a Cushings patient. We do not believe that the world has an accurate accounting of Cushings patients. The only way to authenticate accuracy is with actual numbers. Your help will be appreciated. Thank you."
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."
|...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
book is available as an eBook from
amazon.com or in paperbook form from
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.
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.
|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!
Cushing's Help and Support at http://www.cushings-help.com
Cushing's Message Boards at http://www.cushings-support.com/cgi-bin/ib3/ikonboard.cgi
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