What's New? 
June 29, 2005
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In This Issue: Happenings Site News Meetings Chat Info

The New Message Boards are now up; several skin choices are available
Order Cushing's Awareness Silicone Bands for yourself, a family member or donate to a Cushing's patient at NIH
 By request, a full set of yellow T-shirts is available.
 (NIH) Current Clinical Trials
 (Pituitary) Endonasal surgery
Upcoming Meetings in Chicago;  Australia; Los Angeles; Richmond, VA; Scotland; Baltimore and San Diego
Read all about them below.

Next Online Newsletter will be Wednesday, July 6
read archived issues here »
News!
Board Upgrade and Server Move

There are now several "skins" (cosmetic changes) to chose from for the new message boards. Find the new board at http://cushings.invisionzone.com/index.php?  Please update your links. It will be awhile before all the links are changed on the websites.

Thanks to some very generous donations, and the fact that the poll was so close on blogs and photo gallery, we're able to have both!

Thank you so much! A new adventure has started...

Cushing's Awareness Silicone Bands.

I want to thank the people who generously contributed so that NIH visitors could get Cushie wrist bands. I delivered the first of them last week to Myra B, Lisa J and to the chaplain on the floor. He came in while I was waiting for Myra, was new to NIH and new to Cushing's. I figured he could learn a lot from the included pamphlets and maybe understand his patients a little better as he talks with them each day.

I also left a "package" with Myra to give to another Cushie on their floor who I hadn't met but both Lisa and Myra knew.

So, I distributed the first 4 of the Cushie bands...so far, and I thank you for your generosity in doing this for them.

In addition to the awareness bands, each bag includes a CUSH brochure, my own brochure (the same as I send out with the regular awareness bands), and a Cushings-Help business card.

Each of my brochures was edited to include the name of the person who donated the bands, so that the patients will know that there's another patient out there who did this for them.

Thanks again - you made several Cushies smile last week! More information here.

Order here.

New yellow T-shirts are here, with a different back than the older shirts. These are now available with all the same sayings as the older shirts.  They all have the new back.

Yellow T-shirt link. This goes up to size 2X-large 50-52".

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News:
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

Note: These articles are provided in furtherance of the mission of Cushing's Help and Support to help people with Cushing's or other endocrine problems, their friends and families through research, education, support, and advocacy. These news items are intended to serve as background concerning its subject for patient-physician discussions and discussions among Cushing's Help and Support Message Board Members.

These articles contain information by authors and publishers that is subject to the Copyright Act of 1976, and "fair use doctrine" therein, effective on January 1, 1978 (17 U.S.C. § 101 et seq.). Cushing's Help and Support makes no representation that the information and any of the views or comments contained in these articles are completely accurate or current. Cushing's Help and Support takes no responsibility for any of the content.
NIH Current Clinical Trials Search Term: Cushing's
1. Recruiting New Imaging Techniques in the Evaluation of Patients with Ectopic Cushing's Syndrome
Condition: Cushing's Syndrome
2. Recruiting A Study to Assess SOM230 in Patients with Pituitary Cushing’s Disease
Condition: Cushing's Syndrome
3. Recruiting Study of Depression, Peptides, and Steroids in Cushing's Syndrome
Condition: Cushing's Syndrome
4. Recruiting Cognition, Steroids, and Imaging in Cushings Disease
Condition: Cushing Syndrome
5. Recruiting Genetic Investigation of Pediatric Tumors of the Pituitary Gland
Conditions: Abnormalities; Craniopharyngioma; Cushing's Syndrome; Endocrine Disease; Pituitary Neoplasm
6. Recruiting Defining the Genetic Basis for the Development of Primary Pigmented Nodular Adrenocortical Disease (PPNAD) and the Carney Complex
Conditions: Cushing's Syndrome; Hereditary Neoplastic Syndrome; Lentigo; Neoplasm; Testicular Neoplasm
7. Recruiting Adolescence, Puberty, and Emotion Regulation
Conditions: Mood Disorder; Neurobehavioral Manifestation; Healthy
8. Recruiting Examination of Brain Serotonin Receptors in Patients with Mood Disorders
Condition: Mood Disorder
9. Recruiting Study of Adrenal Gland Tumors
Condition: Adrenal Gland Neoplasm
NIH Current Clinical Trials Search Term: Adrenal
1. Recruiting Catecholamine Reserve and Exercise Tolerance in Healthy Volunteers and Patients with Congenital Adrenal Hyperplasia
Conditions: Congenital Adrenal Hyperplasia; Healthy
2. Recruiting Iodine I-131 Iodocholesterol, its use in adrenal screening
Conditions: Adrenal Gland Diseases; Adrenal Gland Neoplasms
3. Recruiting Study of Adrenal Gland Tumors
Condition: Adrenal Gland Neoplasm
4. Recruiting Antineoplaston Therapy in Treating Patients With Stage IV Adrenal Gland Cancer
Conditions: stage IV adrenocortical carcinoma; recurrent adrenocortical carcinoma
5. Recruiting Brain Imaging of Childhood Onset Psychiatric Disorders, Endocrine Disorders and Healthy Children
Conditions: Autoimmune Disease; Congenital Adrenal Hyperplasia; Healthy; Mental Disorder Diagnosed in Childhood; Neurologic Manifestations
6. Recruiting Defining the Genetic Basis for the Development of Primary Pigmented Nodular Adrenocortical Disease (PPNAD) and the Carney Complex
Conditions: Cushing's Syndrome; Hereditary Neoplastic Syndrome; Lentigo; Neoplasm; Testicular Neoplasm
7. Recruiting Surgery Plus Chemotherapy (Doxorubicin, Vincristine and Etoposide), Mitotane, and Tariquidar to Treat Adrenocortical Cancer
Condition: Adrenal Cortex Neoplasms
8. Recruiting Trial in Locally Advanced and Metastatic Adrenocortical Carcinoma Treatment (FIRM-ACT)
Condition: Carcinoma, Adrenal Cortical
9. Recruiting Heart Disease Risk Factors in Major Depression
Conditions: Adrenal Gland Hyperfunction; Cardiovascular Disease; Involutional Depression
10. Recruiting Stem Cell Transplantation for Metastatic Solid Tumors
Conditions: Cholangiocarcinoma; Colon/Rectal Ca; Bladder Ca; Breast Ca; Basal Cell Ca; Adrenal Ca; Esophageal/Gastric Ca; Hepatocellular Ca; Ovarian Ca; ...
11. Recruiting New Imaging Techniques in the Evaluation of Patients with Ectopic Cushing's Syndrome
Condition: Cushing's Syndrome
12. Recruiting Study of Depression, Peptides, and Steroids in Cushing's Syndrome
Condition: Cushing's Syndrome
13. Recruiting Ovarian Follicle Function in Patients with Premature Ovarian Failure
Conditions: Amenorrhea; Hypoaldosteronism; Hypogonadism; Infertility; Premature Ovarian Failure
14. Recruiting Study of Glyceryl Trierucate and Glyceryl Trioleate (Lorenzo's Oil) Therapy in Male Children with Adrenoleukodystrophy
Condition: Adrenoleukodystrophy
15. Not yet recruiting Study of Bile Acids in Patients With Peroxisomal Disorders
Conditions: Infantile Refsum's Disease; Zellweger Syndrome; Bifunctional Enzyme Deficiency; Adrenoleukodystrophy
16. Recruiting Asthma Clinical Research Network (ACRN)
Conditions: Asthma; Lung Diseases
17. Recruiting Endocrine Studies in Health and Disease
Condition: Endocrine Diseases
18. Recruiting 131MIBG to Treat Malignant Pheochromocytoma
Condition: Pheochromocytoma
19. Recruiting Treatment of Uterine Fibroids with CDB-2914, an Experimental Selective Progesterone Receptor Antagonist
Condition: Leiomyoma
20. Recruiting Genetic Investigation of Pediatric Tumors of the Pituitary Gland
Conditions: Abnormalities; Craniopharyngioma; Cushing's Syndrome; Endocrine Disease; Pituitary Neoplasm
21. Recruiting Cognition, Steroids, and Imaging in Cushings Disease
Condition: Cushing Syndrome
22. Recruiting A Study to Assess SOM230 in Patients with Pituitary Cushing’s Disease
Condition: Cushing's Syndrome
23. Recruiting Use of Sestamibi for Imaging Drug Resistance
Condition: Neoplasms
24. Recruiting Diagnosis of Pheochromocytoma
Condition: Pheochromocytoma
25. Recruiting Evaluation of Patients with Endocrine-Related Conditions
Conditions: Endocrine Disease; Glucose Intolerance; Hyperinsulinemia; Impaired Glucose Tolerance; Non Insulin Dependent Diabetes Mellitus; Obesity; ...
26. Recruiting Androgen Suppression Plus Radiation Therapy in Treating Patients With Prostate Cancer
Conditions: adenocarcinoma of the prostate; stage I prostate cancer; stage II prostate cancer; stage III prostate cancer
27. Recruiting Chemotherapy, Hormone Therapy, and Radiation Therapy in Treating Patients with Locally Advanced Prostate Cancer
Conditions: adenocarcinoma of the prostate; stage III prostate cancer
28. Recruiting Combination Chemotherapy Plus Hormone Therapy in Treating Patients With Metastatic Prostate Cancer
Conditions: adenocarcinoma of the prostate; stage IV prostate cancer; recurrent prostate cancer
29. Recruiting Acupuncture to Reduce Symptoms of Advanced Colorectal Cancer
Condition: Colorectal Neoplasms
30. Recruiting Hormone Therapy With or Without Docetaxel And Estramustine in Treating Patients With Prostate Cancer That is Locally Advanced or At High Risk of Relapse
Conditions: stage III prostate cancer; stage II prostate cancer
31. Recruiting Pelvic Pain in Women with Endometriosis
Conditions: Endometriosis; Pelvic Pain
32. Recruiting Hormone Ablation Therapy, Doxorubicin, and Zoledronate With or Without Strontium 89 in Treating Patients With Androgen-Dependent Prostate Cancer and Bone Metastases
Conditions: recurrent prostate cancer; stage IV prostate cancer; bone metastases
33. Recruiting Docetaxel, Radiation Therapy, and Hormone Therapy in Treating Patients With Locally Advanced Prostate Cancer
Conditions: adenocarcinoma of the prostate; stage II prostate cancer; stage III prostate cancer; stage IV prostate cancer
34. Recruiting Bortezomib With or Without Hormone Therapy in Treating Patients With Relapsed Prostate Cancer
Conditions: adenocarcinoma of the prostate; recurrent prostate cancer
35. Recruiting Hormone Therapy and Docetaxel or Hormone Therapy Alone in Treating Patients With Metastatic Prostate Cancer
Conditions: adenocarcinoma of the prostate; recurrent prostate cancer; stage IV prostate cancer
36. Recruiting Triptorelin, Flutamide, and External-Beam Radiation Therapy or External-Beam Radiation Therapy Alone in Treating Patients With Stage II or Stage III Prostate Cancer
Conditions: stage II prostate cancer; stage III prostate cancer
37. Recruiting Androgen Deprivation Therapy in Treating Patients With Prostate Cancer
Conditions: adenocarcinoma of the prostate; stage I prostate cancer; stage II prostate cancer; stage III prostate cancer; stage IV prostate cancer; ...
NIH Current Clinical Trials Search Term: Pituitary
1. Recruiting Genetic Investigation of Pediatric Tumors of the Pituitary Gland
Conditions: Abnormalities; Craniopharyngioma; Cushing's Syndrome; Endocrine Disease; Pituitary Neoplasm
2. Recruiting Study of Thyrotropin-Releasing Hormone in Normal Volunteers and in Patients with Thyroid or Pituitary Abnormalities
Conditions: Healthy; Pituitary Disease; Thyroid Disease
3. Recruiting Evaluation of Patients with Thyroid Disorders
Conditions: Hyperthyroidism; Hypothyroidism; Pituitary Neoplasm
4. Recruiting The Treatment and Natural History of Acromegaly
Conditions: Acromegaly; Pituitary Neoplasm
5. Recruiting Antineoplaston Therapy in Treating Patients With Neuroendocrine Tumor That Is Metastatic or Unlikely to Respond to Surgery or Radiation Therapy
Conditions: Merkel Cell Carcinoma; Islet Cell Carcinoma; Neuroendocrine Carcinoma; Pituitary Tumor
6. Recruiting Antineoplaston Therapy in Treating Patients With Brain Tumors
Conditions: ACTH-producing pituitary tumor; TSH producing pituitary tumor; adult brain tumor
7. Recruiting A Study to Assess SOM230 in Patients with Pituitary Cushing’s Disease
Condition: Cushing's Syndrome
8. Recruiting A Study to Evaluate Optimal Nutropin AQ and Nutropin Dosing in Pubertal Growth Hormone Deficiency (GHD) Subjects
Condition: Dwarfism, Pituitary
9. Recruiting Bone Mineral Density (BMD) in Adolescents with Growth Hormone Deficiency (GHD)
Conditions: Dwarfism, Pituitary; Turner Syndrome
10. Recruiting Role of Nutrition and Hormones in Boys with Disordered Growth
Conditions: Short Stature; Constitutional Delay of Growth and Development; Dwarfism, Pituitary
11. Recruiting cool.click™ Adolescent Transition Study: Study of Saizen® in Subjects with Childhood-onset Growth Hormone Deficiency
Conditions: Childhood-onset growth hormone deficiency; Pituitary Dwarfism
12. Recruiting Evaluation and Treatment of Neurosurgical Disorders
Condition: Neurologic Disorders
13. Recruiting Decreased Testosterone Levels in Men over 65
Conditions: Aging; Hypogonadism; Andropause
14. Recruiting New Imaging Techniques in the Evaluation of Patients with Ectopic Cushing's Syndrome
Condition: Cushing's Syndrome
15. Recruiting Endocrine Studies in Health and Disease
Condition: Endocrine Diseases
16. Recruiting Defining the Genetic Basis for the Development of Primary Pigmented Nodular Adrenocortical Disease (PPNAD) and the Carney Complex
Conditions: Cushing's Syndrome; Hereditary Neoplastic Syndrome; Lentigo; Neoplasm; Testicular Neoplasm
17. Recruiting Measurement of Outcome of Surgical Treatment in Patients With Acromegaly
Condition: Acromegaly
18. Recruiting Androgen Replacement Therapy in Women with Hypopituitarism
Condition: Hypopituitarism
19. Recruiting Pegvisomant and Sandostatin LAR Combination Study
Condition: Acromegaly
20. Recruiting A Study to Compare the Efficacy and Safety of Pegvisomant to that of Sandostatin LAR in Patients with Acromegaly
Condition: Acromegaly
21. Recruiting Testosterone and Growth Hormone for Bone Loss in Men
Conditions: Hypopituitarism; Hypogonadism; Growth Hormone Deficiency
22. Recruiting Study Comparing SOM230 Subcutaneously and Sandostatin Subcutaneously in Acromegalic Patients
Condition: Acromegaly
23. Recruiting Study of Depression, Peptides, and Steroids in Cushing's Syndrome
Condition: Cushing's Syndrome
24. Recruiting Study of Recombinant Human Insulin-Like Growth Factor I in Patients with Severe Insulin Resistance
Conditions: Insulin Resistance; Hyperglycemia
25. Recruiting Leuprolide in Determining the Cause of Gonadotropin Deficiency
Condition: Hypogonadism
26. Recruiting Acupuncture to Reduce Symptoms of Advanced Colorectal Cancer
Condition: Colorectal Neoplasms
27. Recruiting Clinical Trial of Mifepristone for Bipolar Depression
Condition: Bipolar Disorder
28. Recruiting Pelvic Pain in Women with Endometriosis
Conditions: Endometriosis; Pelvic Pain
Pituitary Jaimie posted this:

Tonight on the msnbc nightly news there was a special on endonasal brain surgery http://www.msnbc.msn.com/id/8304870/ (you can see the video clip online) It is really weird seeing it on television seeing what was happening to me while under anesthesia, but it is also great to know that they are getting the word out on the surgery. Hopefully some neurosurgeons will watch it and want to become experts with these "new tools"


Newest Bios:
To add or edit your bio, please click here »
Gail T Gail T is not yet diagnosed. Sheffield, South Yorkshire, UK
Margaret Margaret is not yet diagnosed Limerick City, Republic Of Ireland
Tammie Tammie plans transsphenoidal pituitary surgery with Drs Ludlam and Delashaw in Oregon sometime in July. Shawano, Wisconsin

• 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:
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.

Order Cushing's Awareness Silicone Bands here.

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 at http://cushings.invisionzone.com/index.php?, http://www.cushings-help.com, http://www.CUSH.org, http://www.cushings-support.com and http://www.cushingsonline.com) at no cost to you.

See the list of 600 participating merchants » When you register between now and the end of March at http://www.iGive.com/cushings, you will earn an additional $5 for these Cushing's Support sites.

Thank you so much for your support.


CUSH can always use funds to help us all, by spreading the word and helping others. What can *you* do to help CUSH?

Upcoming Conventions, Meetings and Seminars:

July 21-24, 2005, MAGIC Foundation Convention, Chicago, OHare Marriott. For Growth Hormone patients and their families. More info here »

July 23-31, 2005, Pituitary Awareness Week, Australian Pituitary Foundation, Ph: 02 9594 5550 Email: pituitary@bigpond.com

July 23, 2005, (Australia) NSW APF Patient Education Seminar, Royal Prince Alfred Hospital, Camperdown, Ph: 02 9594 5550 Email: pituitary@bigpond.com

August 6-7, 2005, The Diabetes Insipidus Foundation, Second Annual Conference, The Diabetes Insipidus Foundation, Sheraton Inner Harbor, Baltimore, Maryland USA, Contact: 5203 New Prospect Drive, Ellicott City, MD 21043 USA, Email: info@diabetesinspidus.org, More info here »

September 3, 2005, (Scotland) 6th National Conference, The Pituitary Foundation, University of Edinburgh, Scotland, UK, More info here »

September 7, 2005, (Australia) Annual Scientific Meeting, Endocrine Society of Australia, For health professionals, Perth Convention Centre, WA, More info here »

October 8, 2005, (Australia) APF [Australian Pituitary Foundation] Annual General Meeting, Ph: 02 9594 5550, Email: pituitary@bigpond.com

More upcoming local meetings are listed here »

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

Online Chats:
Please join us in the Chat Room TONIGHT at 9 PM Eastern.

The chatroom is available through http://www.cushings-help.com/chatroom.htm.

The very first time you go in, you will have to register for this chat. Although you may use your user name and password from the message boards, you will still need to register those before being allowed into the room.

This room is always open, and has convenient links so that you can get needed information while you're chatting.

I hope to see you tonight!


~~~~~~~~~~~

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