Cushing's Help and Support/Newsletters


	What's New?

April 16, 2003

In This Issue:

Our deepest sympathy goes out to the family of Shawn L's niece who recently died as a result of Cushing's. She left behind 3 beautiful sons.

Please express your condolences here.

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.

Next Online Newsletter will be Wednesday, April 23
read archived issues here.

Birthdays:	Other Celebrations:
• Mirage, April 16 • Amy Stafford, April 19 • Deb, April 21 • Lisa Anderson, April 22	• Judy from Pgh, adrenal surgery anniversary (2000), April 19 • Suzannerhs and Jacob, anniversary, April 22 • Cookie is home and getting better every day! • Melinda Freels, is finally finished with 6 weeks of daily Fractionated Stereotactic Radiation
Upcoming Surgery:	Currently Recovering:
• SteveB, Adrenal surgery (BLA), May 5.	Pituitary • Gloria • Lynn P • Daphne • Dina • Jinxie • Arlene • Jaime • Rikki • Duncan (Karen) • Cat • Dana • Dee (deleciab) • Cherri in AL • Linda P. (tinydogpries) • BrendaC • Darren Shore • Erin G.	Adrenal • Allie • Sam • Teri T • CathyR • bp50 (Barb Power) • Angela Kaiser • Melinda 2 • Deborah's son, Curtis, from a second adrenal surgery • Suzanne • Debbie • Kathie Mcconnell (kamaroon) • Denise
	Other •Sue (SuziQ) is currently back at the hospital and she is having a bronchoscopy this morning, looking for a possible lung tumor. She is hopeing that it's only a collapsed lung from the pneumonia she was admitted with on Tuesday. She also has very little oxygen following her surgical hernia removal last week. • Cookie is back in the hospital again with breathing problems. • Melinda Freels, 6 weeks of daily Fractionated Stereotactic Radiation • Luisa (LSpriggs), gamma knife at UVA • Sean S, Ectopic, thymus removed • 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

• A new Endocrinologist has been added to Jamaica and a new Cushing's Specialist added to Vancouver, BC Canada. Canada has it's own page now, too.

• 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 1383 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:
To add or edit your bio, please click here.
Christine Gorrell	Pituitary Cushing's x3; 1993, 1996, 2000. May be having another bout, still testing.	LaPorte, Indiana
Kristina Lenartowicz	Updated Pituitary The tumor went away by itself.	Muskegon, Michigan
Lisa Meares	Pituitary 8mm prolactinoma Dostinex transphenoidal at UVA.	Columbia, SC
Stephen Bondi	Pituitary Unsuccessful transphenoidal, 2 months of daily radiation treatments, left pterional craniotomy, sterotactic cyberknife radio surgery sessions, BLA scheduled for early May	San Rafael, CA

• 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:

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!

5” Pies $10 each

These three-wick tantalizing pies are appropriately scented. They come in a bakery container and make a great gift! Strawberry, Cherry, Apple, Blueberry (with lattice top)

Chocolate & Pecan (without lattice top)

3” Pie Tarts $5 each

These are the same as the 5” pies, only smaller!

Strawberry, Cherry, Apple, Blueberry, Chocolate & Pecan (all no lattice top) with lattice top add $1

Cobblers $12 each Just like Mom used to make only without the calories!
Peach, Blackberry, Cherry

Cupcakes $3 each or 12 for $30

Looking for a unique Birthday gift? How about a plate of Cupcake Candles? Vanilla or Chocolate “cake” with white frosting and sprinkles

Cinnamon Bun - $12 (not pictured)
Just imagine hot cinnamon buns fresh out of the oven and that is what you’ll get with this huge candle. (plates vary)

Chunk Candles
Floating Candles: choice of colors & scents

These can be customized with your choice of color chunks.
Tealights 6 for $3.00

3 x 4” hex $12
Tarts 6 for $5.00

Pyramid $15
Votive $1.50

Please allow 2 weeks for delivery, as each candle is hand poured. Complete the order form below and e-mail to 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.

Colors:

Black, Blue, Brown, Gold, Grey, Ivory, Lavender, Orange, Purple, Red, Yellow, White

Coral, Lime Green, Hot Pink (these are fluorescent and will glow under a black light)

* If you do not see a color here ask me and I’ll try to get it for you

Scents:

Carnation, Cherry, Chocolate, Chocolate Chip Cookie, Cinnamon, Coffee, Cucumber, Eucalyptus, Floral, Georgia Peaches, Hot Apple Pie, McIntosh Apple, Musk, Orange Blossom, Pear Blossom, Polo (for Men), Raspberry, Sugar Cookie, Vanilla

* If you do not see a scent here ask me and I’ll try to get it for you
I’m constantly adding new products so if you’re looking for something just ask!

Cushings Support Fundraiser
QTY
ITEM DESCRIPTION
SCENT/COLOR
COST
EX: 1
5” pie
Apple
$10.00

Total:

Cape Cod Candles:: Lynn in Va Cushieinvirginia@msn.com) 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 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 Labled 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 $226.28, and it hasn't cost them a cent.

Extended Deadline! Extra! Extra! Read all about it. $5 Free Donation. Through May 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.

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 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.

• Upcoming Cushing's Lunch, Columbia, South Carolina area. Renea 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.

New Study

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

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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Join us at:

E-mail: CushingsSupport@aol.com
Toll-Free: (877) 825-0128
On the Web: Cushing's Help Website
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CUSH: Cushing's Understanding, Support and Help

What's New?