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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.
This last weekend, at the
Endocrine Society Conference (Endo2003) in Philly, there were some wonderful
papers presented. I plan to write up my notes and post them soon.
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!), 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!
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| Birthdays: | Other Celebrations: |
Li1dreamer625, June 25
Leslie, June 27
KathyR, June 28
mjskipper, June 30
mrs. lutz, July 1
Tina, July 2 |
During the Endocrine Society Meeting, ENDO 2003 last weekend 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!
Jayne and Robin are expecting.
KarenH Anniversary of the removal of the right side of the pit, June 26
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| Upcoming Surgery: | Currently Recovering: |
Jennifer (jjlr52), Pituitary Surgery, July 9, NIH
Edith, Fibroid Surgery, (subtotal hysterectomy or just plain hysteria), July 14, Lions Gate Hospital
Stayce, Pituitary Surgery, September 24
Jinxie (Jeanne), BLA, cancelled, to be rescheduled
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Pituitary:
Gina
Read the post about all 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
F.A.Q. every week a new FAQ (Frequently Asked Question) from the Archives is put on the intro page of the website
New pictures added from the
Columbus, OH meeting, May 31, 2003. They were submitted by Erin G and David (Mirage).
Australian Surgeons have been added to the Helpful Doctor List
There are now 1518 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.
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 $227.39, 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, at Max & Erma's Restaurant, Indianapolis, June 28th. Sue and Leslie are setting this up. More info here.
Upcoming Seattle Get-Together, Friday, August 8 around 7:30. Deb 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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| Hot Topics! | "All Alone Cushie" @ UCLA June 17 & 18
Original Post From ChatiCat: I'm not sure where I needed to post this but maybe everyone will see it here. This is long but worth reading.
I attend church with a lady who's friends daughter has Cushing's disease. The lady with Cushing's lives in another state and her Mom lives here. I was put in contact with the mother through the lady from my church and she had her daughter call me.
This lady (the daughter) had pituitary surgery a couple of months ago from a doctor that had no experience with pituitary tumors. She had complications during surgery (excessive bleeding) and the surgery was stopped. The doctor packed her head with some type of packing that is supposed to dissolve (not in her nostrils, it is inside her head)
she lost vision in one eye and could not move the eye lid on that same eye after surgery. The doctor told her the only option was to get radiation (gammaknife) since the surgery was unsuccessful. She saw the radiologist and he had no experience with pituitary tumors but was willing to do hers.
I am so thankful that she called me before she had the radiation. I suggested that she get another opinion from a neurosurgeon that had Cushing's experience. She is on disability and thought that her insurance would only pay in her state. She didn't know what to do or where to turn so I took it on myself to do research for her. I had her call her insurance to see if she were to get a referral to a doctor located in another state if they would pay. Yes, her insurance will pay in another state, with a referral. I found a neurosurgeon, with experience and I am happy to say that she got a second opinion. She is scheduled for pituitary surgery later this month. This new neurosurgeon told her she has a 75% chance of getting a cure, which is far better percentage than with the gamma knife.
Thanks to this board people are being helped. I came here when I was looking for a neurosurgeon for this lady and by reading post I found one that I believe will be a good choice. Thank you Mary and everyone for your time and effort.
"Working together everyone can help make a difference"
I call this lady a couple of times each week to check on her as she has no family living in the same state that she lives in. I will keep you all posted on her outcome.
Cathy
Responses:
- Adrienne: Me me me! [puts on superhero outfit] Im here!
I got an email from Cathy and she is calling me this afternoon. I see no reason why I cannot be there. Sure it is a long ride but I know I can go see her. Gives me pleasure to help in such a small way.
What a truly horrible experience for her.
- ChatiCat: This situation just seems to be working out wonderful.
Thanks to Sue and all of you who have helped me search for people in Los Angeles. Adrienne and Sharmyn have both been in contact with this lady(Gina) and both of them have agreed to spend time with her. Adrienne is going to spend the night with her on the night prior to her surgery, take her to the hospital the next morning and remain with her until she is awake from the surgery. Sharmyn will go see her later in the week, when she returns from a business trip and she will be there to transport her back to the Hotel when she is released from the hospital. You are all great! This is a true example of support and thanks to this site otherwise it would not have been possible.
If any of you ever know someone in my area that needs help I will do anything I can for them. I live in North Alabama and I'm about 150 miles from Nashville, TN that is where Vanderbilt (Dr. Blevins) is located.
Thanks again,
Cathy
- ChatiCat: I just wanted to let everyone know that I spoke to Adrienne and Gina tonight. Adrienne is there in Los Angeles with Gina at the hotel. (that's true support) Gina's surgery is scheduled for 8:30 AM tomorrow morning, please keep her in your thoughts and prayers. This has all worked out so well, thanks again for everyone that helped or will be helping in this effort. I will post tomorrow to let everyone know how the surgery went.
- SuziQ: Cathy, I'll be saying prayers for Gina... and sending many hugs her way. I'm also saying a special prayer for Adrienne.... God Bless her for being there! A surgery for Gina because of this website ... Cushies connecting because of this website ... Can't get much better than this.
Read the entire thread here.
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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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