What's New?

July 2, 2003
Happy 4th!

To read the HTML version of this newsletter, or the archives, on the Internet, please click here

In This Issue:HappeningsSite NewsMeetingsClinical TrialsChat 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.



Two weekends ago, at the Endocrine Society Conference (Endo2003) in Philadelphia, there were some wonderful papers presented.  I've written up my notes and you can read them here. While I was there, I was interviewed for the PBS program Voices of Vision. As soon as I know the airing schedule, it will be posted here and on the boards.

As the weather gets warmer and all that pesky snow (and rain!) appears to behind most of us, people are starting to plan Cushing's meetings, lunches and dinners again in several areas of the country. If you're close to any of these places - Seattle, Illinois, Philadelphia, South Carolina, Chicago, New York, Indianapolis (people from Michigan, Ohio and Indiana more than welcome), Columbus, Cleveland, Washington, DC - why not make plans to attend one or more? If there isn't a meeting near you, why not set up your own? It's always wonderful to meet with other Cushies and trade stories and pictures - and ask lots of questions. Meetings are also lots of fun.

For longer term planning, there's the upcoming CUSH Convention in Portland, OR in October and the Pituitary Days in Virginia in April of 2004. Many people from around the country and Canada will be traveling great distances to get to these events and learn more about Cushing's. It's always such a wonderful experience talking with others who share this awful disease with us.

There's nothing like meeting another Cushie!

I hope to see you at one of these meetings.



Next Online Newsletter will be Wednesday, July 9
read archived issues here »
Birthdays:Other Celebrations:
• Sherrie, July 2
• Tina, July 2
• Joy's daughter Jenny, July 4
• Karen M, July 4
• Kristin, July 6
• Lynne, July 7
• Independence Day (USA), July 4

• Valerie Robinson (vhowley): Alexander Richard Robinson was born, June 26

• Jayne and Robin are expecting.
Upcoming Surgery:Currently Recovering:
• Jennifer (jjlr52), Pituitary Surgery, July 9, NIH

• Katie, July 9th, El Dorado Hospital, Tucson, AZ

• Edith, Fibroid Surgery, (subtotal hysterectomy or just plain hysteria), July 14, Lions Gate Hospital

• Cookie, inserting temporary catheter in her neck for dialysis to her leg, July 18

• Stayce, Pituitary Surgery, September 24

• Jinxie (Jeanne), BLA, cancelled, to be rescheduled

Pituitary:
• Gina
Read all about Gina's wonderful helpers »
• Kara
• Lucille
• JudyL
• D'Shawn Russell
• Gloria
• Lynn P
• Daphne
• Dina
• Arlene
• Jaime
• Rikki
Adrenal:
• KimB
• CJ (Christine)
• SteveB
• Allie
• Sam
• Teri T
• CathyR
• bp50 (Barb Power)
• Angela Kaiser
• Melinda 2
Radiation:

• SandieK, gamma knife at Ohio State
• Melinda Freels, Fractionated Stereotactic Radiation
• Luisa (LSpriggs), gamma knife at UVAd
• Dori, gamma knife at UVA
Other Surgery:

• Ria, Biopsy on Thyroid Nodules (Fine Needle Aspiration)
• Katty, total abdominal hysterectomy
• Pat (pat@wtp), Toe Surgery
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 »



Getting the Word Out!

• During the Endocrine Society Meeting, ENDO 2003 in Philadelphia, MaryO was interviewed for the PBS program Voices of Vision.

• Diana wrote to newspaper health reporter. Read about that here »
• Cushing's does spread with just a little "mainstream" publicity.

• Read about what happened in South Carolina »

We're spreading the word!


• F.A.Q. every week a new FAQ (Frequently Asked Question) from the Archives is put on the intro page of the website. The FAQ is currently closed to new questions.

• New pictures added from the Columbus, OH meeting, May 31, 2003. They were submitted by Erin G and David (Mirage).

• There are now 1530 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.


Newest Bios:
To add or edit your bio, please click here »
Cathy Tia Updated
Cyclical
Pituitary
New Zealand
Cherri Simonds Updated
Pituitary
Surgery, Vanderbilt, February 18, 2003
Huntsville, Alabama
Daniel Minton Pituitary
Surgery October 23, 2002
Tyler, Texas
Dawn Not yet diagnosed, PCOS Florida
Holly Waldren Pituitary
Vision problems
no surgery yet
Houston, Texas
Karen S (No Bio) Pit surgery and radio surgery Ocala,Florida
Katie Pituitary
Surgery scheduled for July 9
Tucson, Arizona
Sheila 11 year old daughter
Not yet diagnosed
Branson, Missouri
Tami Frandsen Cushing's Disease
Diabetes, Breast cancer,
double masectomy, Several surgeries re-consructing,
heart valve leakage and murmer,
hysterectomy, renal failure,
rhuematoid arthritis
Utah

• 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 lynnecush@comcast.net. 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 Ribbon!

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 $227.39, and it hasn't cost them a cent.

Extended Deadline - $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 »


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.

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 Cleveland Brunch, Sunday, August 3rd. Sue is setting this up. More info here »

•Upcoming Seattle Get-Together, Friday, August 8 around 7:30. Deb is setting this up. More info here »

•Upcoming Columbus, OH Luncheon, Saturday, August 23rd. Sue 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 »

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

Clinical Trials
CenterWatch also provides educational materials on clinical trials for patients, care-givers and health consumers. To view a more detailed description of these resources, please visit www.centerwatch.com/bookstore/pubs_cons_patientresources.html.

  1. Adolesents and Women aged 8 - 35 wanted for Polycystic Ovarian Syndrome study. This study is being conducted in: - Charlottesville, VA (http://www.centerwatch.com/patient/studies/stu47598.html)
  2. UCSF is currently seeking African American and Caucasian men and women for a Cholesterol and Simvastatin Pharmacogenetics study. This study is being conducted in: - San Francisco, CA (http://www.centerwatch.com/patient/studies/stu47754.html)
  3. Do you have liver disease and high cholesterol?. This study is being conducted in: - Chevy Chase, MD (http://www.centerwatch.com/patient/studies/stu47531.html)
  4. Adolesents and Women aged 8 - 35 wanted for Polycystic Ovarian Syndrome study. This study is being conducted in: - Charlottesville, VA (http://www.centerwatch.com/patient/studies/stu47599.html)
  5. Effects of Lifestyle Intervention and/or Metformin in Women with Polycystic Ovarian Syndrome (PCOS) on Metabolic and Reproductive Function. This study is being conducted in: - Charlottesville, VA (http://www.centerwatch.com/patient/studies/stu47678.html)
  6. Adolescents and Women aged 8 - 35 wanted for Polycystic Ovarian Syndrome study. This study is being conducted in: - Charlottesville, VA (http://www.centerwatch.com/patient/studies/stu47655.html)
  7. A Multicenter, Randomized, Double-blind, Placebo-Controlled, Parallel-Group, Efficacy and Safety Study of a Flexible Dose of DVS-233 SR in Adult Outpatients with Major Depressive Disorder. This study is being conducted in:
  8. Menopausal Women: Are Your Hot Flushes Giving You A Long Hot Summer?. This study is being conducted in:
  9. A Study of the Effects of Guided Imagery on Outcomes of Pain, Functional Status, and Self-Efficacy in Persons diagnosed with Fibromyalgia. This study is being conducted in:
  10. A Phase II Randomized, Double-Blind, Two-Dose, Placebo-Controlled Multicenter Study of 4-Hydroxy Tamoxifen Gel for Cyclical Mastalgia in Otherwise Healthy Pre-Menopausal Women with Regular Menstrual Cycles. This study is being conducted in: - Charlottesville, VA (http://www.centerwatch.com/patient/studies/stu47676.html)

    Additional Educational Resources

    CenterWatch also publishes educational resources for patients and their support network including:

    Informed Consent: A Guide to the Risks and Benefits of Volunteering for Clinical Trials. If you would like to order this book click here: http://www.centerwatch.com/bookstore/pubs_cons_infconsent.html

    Volunteering for a Clinical Trial Pamphlet. If you would like to order this pamphlet click here: http://www.centerwatch.com/bookstore/pubs_cons_brochureform.html

    For information on these and other educational resources click here: http://www.centerwatch.com/bookstore/pubs_cons_patientresources.html

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.

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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