What's New?

April 2, 2003

To read the Archives on the Internet, please click here

In This Issue:Member NewsSite News Meetings NewsChat Info
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 9
read archived issues here.
Birthdays:Other Celebrations:
• tinydogpries, April 4
• Laurapw919, April 4
• Dr.Dori, April 6
• Julye, April 6
• DebMV, April 6
• Stacy, April 7
• Cookie is home and getting better every day!

• Melinda Freels, is finally finished with 6 weeks of daily Fractionated Stereotactic Radiation

• Tim Ross is in Germany for a week of tests, the works!
Upcoming Surgery:Currently Recovering:
• CathyR, adrenal surgery, April 4

• Sam (age 4), BLA, April 7, NIH

• Teri T, Adrenal surgery, April 7, NIH

• Lynn P, pituitary surgery, April 7

• Sue (SuziQ), removal of a surgical hernia, the afternoon of April 9.

• Allie, Adrenal surgery, Sutter Memorial Hospital, April 14

Pituitary
•Daphne
• Dina
• Jinxie
• Arlene
• Jaime
• Rikki
• Duncan (Karen)
• Cat
• Dana
• Dee (deleciab)
• Cherri in AL
• Linda P. (tinydogpries)
• BrendaC
• Darren Shore
• Erin G.
Adrenal
• bp50 (Barb Power)
• Angela Kaiser
• Melinda 2
• Deborah's son, Curtis, from a second adrenal surgery
• Suzanne
• Debbie
• Kathie Mcconnell (kamaroon)
• Denise
Other
• 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

• The Pituitary bios have been split into Pituitary A-L and Pituitary M-Z

• Two new doctors in Tennessee and one in Germany have been added to the Helpful Doctor List.

• eCards for all occasions are now available on the Cushings-Help site.

• Sign up for notification of local meetings. You need not be a CUSH member to participate.

• There are now 1354 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.
Kelly Munshower Surgery, April 2002  
Sean S Updated
Thymus removed
Minimally invasive procedure, "robot-assisted surgery"
Portland, OR
Shawn Pituitary, nothing done yet. Stuttgart, Germany.
Tim Ross Updated
Not Yet Diagnosed
Amsterdam
Wanda Lee Testing positive for Cushing's but nothing being done. Pittsburgh, PA

• 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.

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, Columbia, South Carolina area. Renea is setting this up. More info here.

• 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.

News:

FDA Approves Treatment for Growth Disease

By LAURAN NEERGAARD
.c The Associated Press

WASHINGTON (AP) - Sufferers of a rare disease that causes out-of-control growth are about to get a novel treatment that targets one of the condition's key villains.

The Food and Drug Administration approved Somavert on Wednesday as a treatment for acromegaly. The injected drug blocks the effects of excess growth hormone.

An estimated 40,000 people worldwide have acromegaly, which can make them abnormally tall, cause bone deformities and swell their facial features, hands and feet. Severe joint pain is common, and patients are at high risk of death from heart disease, diabetes and cancer spurred by the condition's excess hormones.

The disease killed the wrestler and actor Andre the Giant, best known for playing Fezzik in the 1986 movie, "The Princess Bride". He died in 1993, aged 46.

Acromegaly occurs when a non-cancerous tumor on the pituitary gland causes secretion of excessive growth hormone, which in turn causes dangerous overproduction of a second hormone called IGF-1.

Removing the pituitary tumor is the first step. But often growth hormone levels don't return to normal for years, so patients also need radiation or drug therapy to suppress growth hormone - but some aren't helped.

Pharmacia Corp.'s Somavert doesn't suppress growth hormone but prevents its bad action, by blocking special cell receptors needed to trigger excess IGF-1, explained FDA's Dr. David Orloff.

More than 90 percent of patients who had failed other treatments saw their IGF-1 levels return to normal with daily Somavert injections, he said.

Normalizing IGF-1 is expected to lessen, if not prevent, acromegaly's worst symptoms. Orloff called Somavert an "extremely promising" treatment.

Pharmacia Corp. refused to reveal how much it will charge for Somavert, even though sales are set to begin next month. But treatments for rare diseases can cost tens of thousands of dollars a year.

Side effects include injection-site irritation, sweating, headache and fatigue.

Patients also must undergo regular liver testing during the first six months of Somavert use, the FDA warned. During studies, two patients experienced very high levels of liver enzymes that signal organ damage.

Somavert, known chemically as pegvisomant, is the first drug to target growth-hormone receptors, and scientists are beginning to study whether that specialized action might help other ailments, too, such as diabetes-caused blindness and nerve damage.

03/26/03 15:10 EST

Copyright 2003 The Associated Press. The information contained in the AP news report may not be published, broadcast, rewritten or otherwise distributed without the prior written authority of The Associated Press. All active hyperlinks have been inserted by AOL.

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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