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To read the HTML version of this newsletter, or the archives, on the Internet, please click here
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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.
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| Birthdays: | Other Celebrations: |
natalie86, natalie65, June 11
TomO, June 11
Mary Southard, June 14
Melinda Freels, June 14
Tweet95, June 15
Michael Wademan, June 18 |
Sue and Don's Anniversary, June 13
Natalie and Joe's Anniversary, June 14
Cheryl (Shep) Surgery Anniversary, June 14
Father's Day, June 15
Sherri and Hubby's 14th Anniversary, June 17
Jayne and Robin are expecting
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| Upcoming Surgery: | Currently Recovering: |
Katty, total abdominal hysterectomy, June 13, Riverside Methodist Hospital, Columbus, Ohio
Ria, Biopsy on Thyroid Nodules (Fine Needle Aspiration), Upstate Medical Center Syracuse NY, June 17
Edith, Fibroid Surgery, (subtotal hysterectomy or just plain hysteria), July 14, Lions Gate Hospital
Stayce, September 24
Jinxie (Jeanne), BLA, cancelled, to be rescheduled
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Pituitary
JudyL
D'Shawn Russell
Gloria
Lynn P
Daphne
Dina
Jinxie
Arlene
Jaime
Rikki |
Adrenal
Jinxie (Jeanne)
CJ (Christine)
SteveB
Allie
Sam
Teri T
CathyR
bp50 (Barb Power)
Angela Kaiser
Melinda 2 |
Other
Pat (pat@wtp), Toe Surgery
SandieK, gamma knife at Ohio State
Melinda Freels, 6 weeks of daily Fractionated Stereotactic Radiation
Luisa (LSpriggs), gamma knife at UVAd
Dori, gamma knife at UVA |
| News! |
| Download the Hotel Reservation Information (Word File) for Portland, OR, CUSH meeting, October 2003, here.
If you must call them instead of filling out this form, the number is 503-221-1611 and for the special rates, you need to say that you're with:
Group Name: Cushing's Understanding, Support and Help Organization
For this Event: Cushing's Organizations 10.03
Dates: October 14-19, 2003
Map:
Map to the Convention Site
F.A.Q. every week a new FAQ (Frequently Asked Question) from the Archives is put on the intro page of the website
There are now 1498 members on the Message Boards. Who will be number 1,500?
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.
| Newest Bios: |
| To add or edit your bio, please click here. |
| Cathy Tia |
Cyclical
Pituitary
Also PCOS |
New Zealand |
| falnanglnc (Lil Deb) |
Updated
Pictures Added
left adrenalectomy, April 2, 2003 |
Austin, TX |
| Jenifer McPherson |
Pituitary
No surgery yet |
Hartsville, S.C. |
| SteveB |
Updated
Since 1991, unsuccessful transphenoidal surgery,
2 months of daily radiation treatments,
left pterional craniotomy,
in excess of 5 sterotactic cyberknife radio surgery sessions.
Most recently, unsuccessful BLA May 5, 2003.
Considering Retroperitonal Adrenalectomy next |
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| Trish Hickle |
Adrenal
Surgery March 10, 2003 |
Alberta, Canada |
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 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."
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| Fundraising: |
- Decorative Candles:
- Julia (Spencer's Mom) is beginning to make food oriented candles - shaped like sundaes, pies, and other desserts. She will donate 20% of the proceeds to CUSH and she's even trying to making a candle in the shape of the CUSH pin!
Please allow 2 weeks for delivery, as each candle is hand poured. E-mail jwahlton@cfl.rr.com. 20% of proceeds will be donated back to CUSH. Payment is made via Paypal only to jwahlton@cfl.rr.com. Once order is placed we will send you a Paypal invoice for payment, which will include shipping charges.
Cape Cod Candles:
Lynn in Va Cushieinvirginia@msn.com) has an idea for a CUSH fundraiser. 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 Cushieinvirginia@msn.com 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 Sherriblakeman@comcast.net 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."
| 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 $227.33, and it hasn't cost them a cent.
Extended Deadline! Extra! Extra! Read all about it. $5 Free Donation.
Through July 31, 2003, (extended deadline)
each new member who registers at iGive and shops will
earn an additional $5 for these Cushing's Support sites. That's on top of the
standard of up to 26% from their shopping. Only
hitch - they've got to shop within 45 days of joining.
With over 410 stores now at iGive.com, they've got
some great choices.
See the list of participating merchants.
Recent Amazon Purchases: what happens?
Amazon is longer available on iGive.com, so it will not be possible to place new orders which qualify for donations. Also, orders shipped after April 23, 2003 do not qualify for iGive credit, even if they were placed prior to April 16, 2003. If you have not already done so, please report all your existing Amazon.com orders through the Transaction Reporting Form: http://www.iGive.com/html/missingtrans.cfm
The deadline to report Amazon orders placed through iGive.com is June 23, 2003.
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?
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| 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 and Emilie's surgeries.
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.
Our rooms are booked at the Days Inn City Center location. The cost for a single room suite is $59.00 for one or two beds with NO BREAKFAST or $69.00 for one or two beds with a Full American Breakfast. In either case, there will be an 11.5% occupancy tax. Both smoking and non-smoking are available. Download the Hotel Reservation Information (Word File) for Portland, OR, CUSH meeting, October 2003, here.
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.
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.
Download the Hotel Reservation Information (Word File) for Portland, OR, CUSH meeting, October 2003, here.
If you must call them instead of filling out this form, the number is 503-221-1611 and for the special rates, you need to say that you're with:
Group Name: Cushing's Understanding, Support and Help Organization
For this Event: Cushing's Organizations 10.03
Dates: October 14-19, 2003
Thanks to everyone - this is going to be one great conference!
Upcoming Cushing's Lunch, being rescheduled for June, Illinois and surrounding areas. Leslie is setting this up. More info here.
Upcoming Cushing's Lunch, June 21, Edmonds, WA area. Deb is setting this up. More info here.
Upcoming Cushing's Dinner, June 21, Philadelphia. Dr. Dori is setting this up. More info here.
Sign up for notification of local meetings. You need not be a CUSH member to participate.
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.
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.
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| News | Women With Pituitary Problems Wanted For A Testosterone Study
Purpose: Testosterone is the principal male sex hormone but is also present in smaller amounts and may be important in women. Among its likely actions in women are the building of bone and muscle mass, increase in interest in sex (libido) and effects on the mood. The role of testosterone replacement in women with low testosterone levels is currently being studied. In this study, you will be given an experimental preparation of a testosterone gel which will be applied on the skin of your outer thigh for up to 2 months. It is anticipated that this experimental gel application will produce levels of the drug in the normal range for women. A further aim of this study is to assess whether female patients with dysfunction of the pituitary gland have abnormalities in body composition, muscle strength and thinking and sexual function.
Criteria for subjects:
- Women ages 18 to 50.
- Hypopituitarism with documented central adrenal and gonadal deficiencies, on conjugated equine estrogen replacement
- Serum testosterone level of < 20 ng/dl or free testosterone <1.5 pg/ml (can be tested at study site)
- written informed consent
- No other significant medical condition
- Patients must discontinue their current testosterone replacement
Number of patients-15
Location: King/Drew Medical Center in Willowbrook and UCLA in West Los Angeles
Enrollment Period: Winter-Spring 2003
Patient Compensation: $500
For more information or subject referrals contact:
Ted Friedman, M.D., Ph.D. Clinical Director
Telephone (323) 563-9353
Email: mail@goodhormonehealth.com
Fax: (323) 563-9352
Charles R. Drew University of Medicine and Sciences
1731 E. 120th St.
Los Angeles, California 90059
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| 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. 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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