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April 12, 2006


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In This Issue:HappeningsSite NewsMeetingsChat Info
Our Condolences to the family of Sue Koziol (SuziQ)
Notes from the first Cushing's Awareness Day Forum, Oklahoma City, OK April 2006.
The Cushing's Awareness Day Resolution from the Senate
National Cushings Awareness Day Holds Special Meaning for Local Woman (AutumnOMA on the boards)
Cushing’s syndrome alert: Listen to your body
Attend a meeting of the NIH Director's Council of Public Representatives
Avoiding weight gain while taking steroids
Growth Hormone
Salk scientist Ron Evans wins 2006 Gairdner Award for his discovery of hormone sensors
US Postage Stamps for Cushing's Awareness
Order Cushing's Awareness Silicone Bands for yourself, a family member or donate to a Cushing's patient at NIH
Order the CUSH Cookbook
Fun'n'Sun Cushie Cruise
Upcoming Meetings in the Washington, DC metro area. ENDO 2006, Boston Convention & Exhibit Center.
Read all about them below.

 CUSH Founding President, Sue Ann Koziol (SuziQ).

Sue was a very special friend to Cushies world-wide. We will remember her always.

There was an online memorial for Sue during the Cushing's Awareness Day Medical Forum in Oklahoma, April 12-8, 2006. For more information, please visit this topic on the message boards

The video of Sue's memorial service in Oklahoma City at the first ever Cushing's Awareness Day Medical Forum, April 6-8, 2006 can be found here: http://www.CUSH.org/downloads/sue.MOV It's pretty long, so it takes a while to start.

The text of the message read on the video is on Sue's memorial site at http://suziq.memory-of.com/tributes.aspx?Aid=1278656

To light a candle or post a tribute for Sue, please go here: http://suziq.memory-of.com

To read more about Sue's journey, please click here: http://cushings.invisionzone.com/index.php?showtopic=14655

For Immediate Release:                                                                   

                    April 6, 2006                                                                                                           




WASHINGTON, D.C. – U.S. Senator James M. Inhofe (R-Okla.) is proud to announce the designation of April 8, 2006 as “National Cushing’s Syndrome Awareness Day.”  Inhofe’s resolution (S. Res. 423) creating the designation passed the Senate by unanimous consent.  Inhofe introduced this resolution to broaden public awareness and show his continued support for those suffering from this disease. 

“My desire is to see my Oklahoma constituents and all Americans receive the best possible health care,” Inhofe stated.  “Cushing’s syndrome often goes undiagnosed or misdiagnosed, many times leading to death, because the initial symptoms are shared with a number of milder ailments.  Since awareness of the syndrome is low, doctors do not always run the tests necessary for diagnosis, and patients do not know to ask for them. It is my hope that ‘National Cushing’s Syndrome Awareness Day’ will help Okies and everyone suffering with this disease to receive better health care.” 

Cushing’s Syndrome is an endocrine or hormonal disorder.  It is caused by over-exposure of the body’s tissue to high levels of hormone cortisol.  An estimated 10 to 15 people per million suffer from this debilitating disease.  Common symptoms include abnormal weight gain, skin changes, fatigue, diabetes, high blood pressure, and depression.    

Over production of cortisol is commonly associated with the treatment of asthma, rheumatoid arthritis, and lupus.  Additionally, delayed treatment of Cushing’s Syndrome significantly reduces treatment options, such as radiation therapy.   Thus, it is imperative that both doctors and patients heighten their awareness of Cushing’s Syndrome.

From the message board post at http://cushings.invisionzone.com/index.php?

CUSH proudly presented a Cushing's Awareness Day Forum in Oklahoma City, OK on April 6-8, 2006.

Cheryl wrote:

Where to begin.....

Wed night we went to eat Mexican food, it was really fun to see everyone that came in, and missed those who didn't make it.

Thursday-We met at the mall, of course it started to sprinkle right as I was taking stuff in. But everyone helped set up. Julia/Jane, TBerry (Terri), MaryO, Christy Smith, Tanya from Tulsa OK (was just diagnosed) and Sandy Jones-who is panhypopit and involved with a group about growth hormone were there.

We just introduced ourselves, explained our stories, talked a tad about the cookbooks, ate, and had a short sweet memorial for SuziQ. My daughter-in-law had made a tape with "How Great Thou Art", so I played that, I read "The Dash" poem, and then MaryO asked me to read a short paragraph about how she felt. I apologize, I ran out of ink on my computer and then forgot to get the info of things said on the boards...but we've all read those lovely tributes, I'm just so sorry I forgot to get them printed before I left.

That night we went to eat BBQ-it was really good I thought.

Let's see...that brings us to Friday.

We had, myself, Christy, MaryO, TBerry, Christy's husband Robert, a wonderful OSU nursing student, mothers of two patients, two nurses, some Cushing's patients and a newly diagnosed young lady, and one lady who I wasn't sure why she was there :)

I introduced myself, then Sen. Inhofe's staff member -Sabrina, who talked about Sen. Inhofe's commitment to health issues and the Resolution.

Dr. Pelofsky spoke first-the neurosurgeon. he talked alot about Dr. Cushing- (they all gave a bit of a background on Dr. Cushing-excellent info) and how the numbers should be much higher than the estimated 10-15 per million, but many are misdiagnosed.

He talked about how many people have hypertension and diabetes, but yet they aren't tested for Cushings (I did invite the diabetes unit at the hospital to come but they didn't). He also showed a pit surgery-very interesting... Dr P uses a tissue glue & then gel instead of packing (I was so happy with it!). He said there is a 74-84% success rate with surgery. He has done about 1000 pit tumor surgeries (not sure how many of those are Cushings)

He also said that sometimes, even if the pit tumor is removed, that a person could still have cells in the veins, or walls of the arteries around that area and still have Cushings. They could be in places that are not accessible, or impossible to remove (like the carotid arteries) for instance. He talked about he had met a man in a restaurant who described this way to do CT scans, while Dr. P was writing it all down on his napkin. The guy worked for the Beatles, he used his talents to work with "EMI", something like that for the Beatles anyway, he went on to get a Noble prize for his development of the CT scans...At one time, Dr P was President of the Harvey Cushing Society.

Dr. Rose-with the hospital liver unit, spoke next he talked about certain medications that Cushing's patients might take that could affect the liver. Also about how obesity affects the liver, about liver biopsies. It was also a very interesting talk.

Dr. Cannon-adrenal surgeon then spoke about adrenal surgery, and showed an adrenal surgery. It was really interesting too...he said that sometimes a petscan, or octreatide scan would be better ways of looking for an unknown tumor. He mentioned that sometimes, that the IPSS tests are not done right, because they aren't labeled right, listed names wrong...all sorts of things. He said it would be good to have the Dr call and ask for the sample to be "shephered" on it's way to the lab, to be sure everything is done correctly. And to let the lab know that it is not a routine blood cortisol level.

A Dr Schlessinger-from the Pathology lab also came during Dr. Cannon's talk. So he was able to answer a few questions from the patients. He just stopped in for a bit, I had asked him about cortisol tests and things like that earlier. We really appreciated the info from both Dr. Cannon & Schlessinger, they were very informative. Dr Cannon had worked so hard on his presentation, and was so happy to be able to speak to us. Julia especially thought Dr. Cannon was great, he seemed to understand many of our issues.

Dr. Gude spoke last. He is the Endo. One very interesting thing he said was they have changed the lab values for the dex test just this year. The endo I used during surgery said I didn't have Cushings because my dex test was normal. However, my number was 4.1. Dr. Gude said they lowered the level to 1.8.
He felt that residual symptoms could be helped by growth hormone. He made it plain that one normal level in testing did not mean a patient did not have Cushings. 40%of MRI's are negative,. a tumor over 6 mm is considered significant. The open MRI is less effective because it has less resolution. He said you need an experienced surgeon. I think he said the best index of cure after surgery is a level of less than 1.8 cortisol about 14 days after surgery.

That night we went to eat at Macaroni grill, they have delicious bread and the best chocolate cake and waiters....Christy-what happens in Vegas stays in Vegas...that applies to Oklahoma too! lol

Let's just say we had the cutest and best smelling waiter ever. He gave us free dessert....

Brenda M from TX, Christy, MaryO, Julia/Jane, Robert, me, TBerry, and I think someone is missing from there, but we went to eat at Macaroni Grill.

Saturday we were still exhausted, so we went on a water taxi boat ride and to the botanical gardens. Missed the "Monet" exhibit at the art museum...bummer. Drove by the Bombing Memorial then went back to eat...yes, that is mostly what we did. It sure was good tho.

I took lots of pics, as did MaryO & Christy...Julia was frustrated with us because we all had our cameras out...but gosh she was such a good sport about it. The weather was beautiful, coolish and just nice....except for the one day it sprinkled before the Thurs conference.

One gal at the Friday conference had just been diagnosed with Cushings, she was very sweet and gave us 6 door prize gifts to give away.

The nursing student was so excited about being there! She wants me to talk to her nursing class as well.

All in all, I enjoyed the talks, getting to meet everyone, and trying to get the Awareness Message out.

Wish you could have all been there....love, cheryl f

Then we all went home to sleep.

A special 'thank you' to Cheryl for putting this forum together for us.

More info here: http://cushings.invisionzone.com/index.php?

Drs. Zerhouni and Kington would like to invite you to attend the 15th Meeting of the NIH Director’s Council of Public Representatives (COPR). It is a public meeting and anyone interested in improving health through medical research is invited to attend this important meeting. Detailed information is provided below:

Title: Attend a meeting of the NIH Director's Council of Public Representatives

Date: Friday, April 21st

Time: 8:30 a.m. to 4:30 p.m.

Location: Building 31C, Conference Room 6 on the NIH Campus, Bethesda, MD

The meeting agenda is available on the COPR Web site at http://copr.nih.gov.

The NIH Director's Council of Public Representatives (COPR) is a federal advisory committee, made up of members of the public, who advise the NIH Director on issues related to:

  • Public input and participation in NIH activities
  • Public input and participation in the NIH research priority setting process
  • NIH outreach programs and efforts

The COPR is made up of 21 people from across the country who have been chosen to represent the public through an open application process. They are patients, family members of patients, health care professionals, scientists, health and science communicators, and educators. To learn more visit http://copr.nih.gov.

Public comment will also be included during a portion of the program; see below for important information about how to register.

Next steps

You can attend the spring COPR meeting at no cost. Visitors to the NIH campus in Bethesda, Maryland, should bring a photo ID and allow additional time for security procedures. Call 301-594-6677 for more information, or visit the Web site at http://www.nih.gov/about/visitor/index.htm to find the best way to travel and where to get your visitor badge.

If you wish to speak during the public comment portion of the meeting, please contact Jennifer Gorman by e-mail at gormanj@od.nih.gov to learn about the sign-up and submission process. Approval to present comments at the COPR meeting will be given on a first-come, first-served basis.

If you’re interested in representing your community on the 2007 NIH Director’s Council please see the application online at http://copr.nih.gov/application.asp.

Thank you.

Jennifer E. Gorman
NIH Public Liaison Officer
and Director's Council (COPR) Coordinator

Office of the NIH Director

CUSH Cookbooks are here!

The CUSH Cookbooks are only $10.00 each including shipping and handling.

Any profits will go to help bring awareness for Cushings. Thank you!

The cookbooks have about 169 recipes, so it isn't going to be a huge cookbook, but one that includes contributions from many Cushing's message board members..

To purchase a cookbook send a check to:
PO Box 1843
Florence, AL.

please indicate on your check "Cookbook" or include a note with payment.

You can also purchase cookbooks through Paypal. Please indicate that the payment is for "cookbook."

Be sure that your correct mailing address is included with payment along with a contact phone number in case we have questions concerning your order.

If anyone has any questions concerning cookbook payments please contact CUSH Treasurer Cathy Gifford at CUSHOrg@aol.com


Cruises mentioned here are not sponsored by CUSH
but a fun time with others met on the boards and in the chatroom.

The ship is Explorer of the Seas and this is a 5 night cruise out of NY/NJ). All meals are included. 2 days at dock in Bermuda.

The ship has a rock climbing wall, ice rink, mini golf, you name it, it's got it.

Must be prepared to have fun, relax and chill!

More info here »

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

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.

Cushing's Awareness Day April 8, 2006, the Cushing's Understanding, Support & Help Organization (CUSH)  petitioned in the USA to have April 8 be declared as Cushing's Awareness Day. This date was chosen because it was Dr. Harvey Cushing's Birthday. More info here

The Cushing's Awareness Day Proclamation, from http://thomas.loc.gov/cgi-bin/query/z?c109:S.RES.423:

Designating April 8, 2006, as `National Cushing's Syndrome Awareness Day'. (Agreed to by Senate)



2d Session

S. RES. 423

Designating April 8, 2006, as `National Cushing's Syndrome Awareness Day'.


April 4, 2006

Mr. INHOFE (for himself and Mr. COBURN) submitted the following resolution; which was considered and agreed to

RESOLUTION Designating April 8, 2006, as `National Cushing's Syndrome Awareness Day'.

Whereas Cushing's Syndrome annually affects an estimated 10 to 15 people per million, most of whom are currently between the ages of 20 and 50;

Whereas Cushing's Syndrome is an endocrine or hormonal disorder caused by prolonged exposure of the body's tissue to high levels of the hormone cortisol;

Whereas exposure to cortisol can occur by overproduction in the body or by taking glucocorticoid hormones, which are routinely prescribed for asthma, rheumatoid arthritis, lupus, or as an immunosuppressant following transplantation;

Whereas the syndrome may also result from pituitary adenomas, ectopic ACTH syndrome, adrenal tumors, and Familial Cushing's Syndrome; Whereas Cushing's Syndrome can cause abnormal weight gain, skin changes, and fatigue and ultimately lead to diabetes, high blood pressure, depression, osteoporosis, and death;

Whereas Cushing's Syndrome is diagnosed through a series of tests, often requiring x-ray examinations of adrenal or pituitary glands to locate tumors;

Whereas many people who suffer from Cushing's Syndrome are misdiagnosed or go undiagnosed for years because many of the symptoms are mirrored in milder diseases, thereby delaying important treatment options; Whereas treatments for Cushing's Syndrome include surgery, radiation, chemotherapy, cortisol-inhibiting drugs, and reducing the dosage of glucocorticoid hormones;

Whereas Cushing's Syndrome was discovered by Dr. Harvey Williams Cushing, who was born on April 8, 1869;

Whereas the Dr. Harvey Cushing stamp was part of the United States Postal Service's `Great American' series, initiated in 1980 to recognize individuals for making significant contributions to the heritage and culture of the United States;

Whereas President Ronald Reagan spoke on April 8, 1987, in the Rose Garden at a White House ceremony to unveil the commemorative stamp honoring Dr. Harvey Cushing;

Whereas following the ceremony, President Reagan hosted a reception in the State Dining Room for Mrs. John Hay Whitney, Dr. Cushing's daughter, and representatives of the American Association of Neurological Surgeons; and

Whereas the Senate is an institution that can raise awareness in the general public and the medical community of Cushing's Syndrome:

Now, therefore, be it Resolved, That the Senate--

(1) designates April 8, 2006, as `National Cushing's Syndrome Awareness Day';

(2) recognizes that all Americans should become more informed and aware of Cushing's Syndrome;

(3) calls upon the people of the United States to observe the date with appropriate ceremonies and activities; and

(4) directs the Secretary of the Senate to transmit a copy of this resolution to the Cushing's Understanding, Support & Help Organization

National Cushings Awareness Day Holds Special Meaning for Local Woman from http://www.kptm.com/news/local/2603791.html

National Cushings Awareness Day Holds Special Meaning for Local Woman (AutumnOMA on the boards)

April 8th is National Cushing's Awareness Day, a day designed to shed light on a rare disease.

One local woman fought to have this day recognized.

Autumn Stinton describes the disease as “a life-altering, frightening disease,” and has had a major impact on her life.

“You wake up one morning and you look in the mirror and you don't even know who you are,” Autumn said.

Weight gain, brittle bones, psychological problems are just some of the symptoms, but because the disease only affects about ten out of every one million people, its difficult for doctors to recognize.

Stinton and others shared their concerns with leaders in Washington, DC and their efforts are paying off.

Just this week, Congress passed a resolution declaring April 8th as National Cushing's Awareness Day.

In particular, Stinton hopes the day catches the eye of doctors across the country.

“Their knowledge will prevent a lot of people from suffering,” she said.

For more information on cushing's disease, log on to

Cushing’s syndrome alert: Listen to your body From http://www.clevelandjewishnews.com/articles/

Cushing’s syndrome alert: Listen to your body

Moon-shaped face, upper-body obesity and redness of cheeks and neck are all tell-tale external symptoms of Cushing’s syndrome.

When something goes wrong, the typical response is “Why me?” So when I learned I had Cushing’s syndrome and asked the “Why me?” question, I sensed the answer is that I can share my experience with others about this highly debilitating but reversible disease.

Cushing’s syndrome, or hypercortisolism, is a hormonal disorder caused by the body’s abnormal production of the hormone cortisol. The problem lies in either a malfunctioning adrenal or pituitary gland. It is relatively rare, affecting 15 out of 1 million people (most often adults 20 to 50 years old). Children can also get it.

Over the past year I felt major shifts in my body. I expressed concern to my family internist about my sudden weight gain, particularly in my upper body and face, puffy pockets of fat ringing my neck; muscle weakness; and a buffalo-like hump that appeared at the top of my shoulders.

Other symptoms included thin, easily bruised skin; the onset of osteoporosis; high blood pressure; shortness of breath; redness of my chest and face; and thinning of my legs and arms. Yet my doctor was unable to connect the dots.

Frustrated, I changed internists, and during a routine physical, my shrewd new doctor, Loren Kendis, familiar with the work of Cleveland native Dr. Harvey Cushings, gave my condition a name. He consulted with endocrinologist Dr. Robert Brenner and sent me for a simple series of blood and urine tests to measure my cortisol level. Within a week his initial diagnosis was confirmed.

I had a CT scan of the adrenal gland, located at the top of the kidney, and an MRI of the pituitary gland. My problem turned out to be an adrenal adenoma, a benign tumor of the adrenal gland. The cause of adrenal adenomas is unknown, but the current theory is that they arise because of mutations in certain genes.

Following laparoscopic removal of the diseased adrenal gland at The Cleveland Clinic, I’ll require steroid replacement for a few months, as normal adrenal tissue does not recover immediately.

I’m going to be fine, I’ve been told, but only because I took control of my own health and at last received expert medical advice.

Gone untreated, Cushing’s syndrome is fatal.

They say architects plant vines to hide their mistakes; doctors bury them. The moral of this cautionary tale? Listen to your body. The life you save may be your own.


Avoiding weight gain while taking steroids
From http://www.timesonline.co.uk/article/0,,8126-2127568,00.html

I have been put on long-term steroids because of a pituitary condition. Is there any way of avoiding weight gain with steroids? My appetite has increased and I am craving certain foods (especially ice-cream).

Karen Hannah, London

The side-effects of long-term steroid use — particularly weight gain — can cause real angst. It sounds bizarre, but try a sniff of vanilla essence every time you crave something sweet. Cravings often disappear if you can distract yourself.

Avoid sweet foods such as honey, chocolate, squash and fizzy drinks, or any of the other high-GI foods, such as bananas, mashed potatoes, wheat breads, popcorn, etc. While your initial craving might be satisfied, you’ll experience a rapid sugar high, and your sugar levels can come crashing down, making you want to eat more. The cycle just repeats itself and the weight piles on.

Choose instead mainly low-GI foods, and stick to a regular eating pattern: three meals a day and maybe fruit snacks in between. Great low-GI foods include porridge and oatmeal; whole-grain rye bread; brown and white rice; white and whole-grain pasta; dried apricots, apples, cherries, fresh dates, grapefruit, grapes, kiwi fruit, mangoes, oranges, peaches, pears and plums; avocados, raw carrots, green, leafy vegetables, peas, potatoes (not mashed) and sweet corn; lentils and beans; organic soya (to avoid GMs) products.

Low-GI foods take longer to digest and keep the blood-sugar level constant so that cravings for sweet stuff are less likely. It is a mistake to skip meals to keep weight down: although the decrease in calories should lead to weight loss, the opposite usually happens because, as blood-sugar levels drop, you get tired and cravings increase.

Also, if you haven’t eaten for a while, you often end up bingeing on quick-fix, high-fat, high-sugar convenience stuff, so that your total calorie intake is higher than if you’d had a proper meal. This is the logic behind including regular healthy snacks in your diet: fresh fruit mid-afternoon will keep blood-sugar levels constant and stop you reaching the “I’m-starving” stage in the evening.

Some steroids (usually those taken orally as opposed to inhalers, but check with your doctor if you’re a long-term inhaler user) may increase the risk of osteoporosis. This is a real downside — discuss your bone status with your doctor, who may want to arrange a bone-density scan. To help to prevent this, take as much exercise as possible.

After the age of about 20, when bones stop growing, keeping active reduces the likelihood of fractures: not only does it stimulate the body to continue laying down strong new bone, but people who take regular exercise are less likely to fall badly (and so reduce the risk of fractures). I would try to boost your intake of bone-friendly calcium. Many people think that dairy products — milk, cheese, yoghurt — are fattening, lead to high cholesterol levels, cause catarrh, they upset the bowels, etc, and so cut down on their intake. However, dairy products provide some of our best sources of bone-building calcium, so that it’s important to include these in your diet.

Rather than choosing full-fat varieties, save calories by buying skimmed or semi-skimmed milk (calcium is held in the non-fat part of milk) and lower-fat cheeses such as Edam, Gouda and cottage cheese. It’s advisable to stick to lower-fat dairy products anyway to limit your intake of saturated animal fats, which reduce your body’s ability to make the bone-protecting hormone progesterone.

In the UK the reference nutrient intake (RNI) for adults aged 19 to 50 is 700mg calcium daily, but many nutritionists, myself included, think the US recommended 1,000mg is more like it. This equates to roughly 200ml of milk, a pot of yoghurt, or a matchbox-sized piece of cheese. Non-dairy sources of calcium include leafy green vegetables, small-boned fish such as sardines, fortified soya milk, orange juice, cereals, seeds, nuts and dried fruits. Unfortunately, calcium from non-dairy foods isn’t as easily absorbed by the body, so non-dairy-eating people taking steroids should ask their doctor about supplements.

Bones also need magnesium, found in chickpeas, beans, tofu, almonds, cashews, lentils, potatoes and oatmeal. The recommended intake is 270mg for women and 300mg for men, which equates to 66g of Brazil nuts or 100g of pine nuts. In addition, the body needs vitamin D to make strong bones. Fifteen minutes in the sunshine every day will do the trick, but if this isn’t possible some scientists recommend taking 200 to 400 international units (IU) of vitamin D daily if you are under 70, and 600 IU if you are over.

Some fizzy diet drinks contain phosphoric acid, which increases loss of calcium from bones; salt also increases calcium loss, so try to keep your intake low. Oily fish, walnuts, walnut oils and hemp oil boost the essential fatty acids that build and maintain healthy bones, but, as with full-fat dairy products, the quantities shouldn’t be excessive, as they can pile on the weight. You can get enough beneficial omegas from a couple of 140g portions of oily fish (fresh tuna, salmon, sardines, mackerel, etc) a week, or by using seeds and oils on your salads. You could also consider taking the omega oil supplement MorEPA, or any of the others I mentioned last week, that are available from: www.healthyandessential.co.uk

Growth Hormone From: http://www.prweb.com/releases/2006/4/prweb368608.htm
AllMed Healthcare: Deciding the Medical Necessity of Insulin Pumps

AllMed Healthcare Management Medical Specialist Lewis Chase has recently authored a feature article “Diagnosing Adult Growth Hormone Deficiency” that is featured on the AllMed Healthcare website.

(PRWEB) April 11, 2006 -- AllMed Healthcare Management Medical Specialist Lewis Chase has recently authored a feature article “Diagnosing Adult Growth Hormone Deficiency” that is featured on the AllMed Healthcare website. The article may be viewed by clicking the following link: http://www.allmedmd.com/resources/articles/growth.html

Growth hormone deficiency in adults causes a variety of metabolic abnormalities and treatment with recombinant human growth hormone can result in improvement of these abnormalities. Frequently however, it’s difficult to isolate adult growth hormone deficiency when the patient is being treated for other pituitary abnormalities. But, it is easier to establish the deficiency in patients having hypothalamic or pituitary disease and multiple other hormonal deficiencies (TSH, ACTH, gonadotropins, vasopressin).

Treating a patient with recombinant human growth hormone is expensive and can cause serious side. Most of the symptoms of adult growth hormone deficiency can be treated successfully with weight loss and medications directed at specific. Treatment with recombinant human growth hormone should be considered only in adults with well established growth hormone deficiency. A doctor can establish growth hormone deficiency with high sensitivity and specificity when there are 3 or 4 additional pituitary hormonal deficiencies or an IGF-1 less than 84 mcg/liter.

More information on AllMed and the company’s peer review & medical review services can be found on AllMed’s web site at http://www.allmedmd.com/ .

About AllMed Healthcare Management
Founded in 1995, AllMed (http://www.allmedmd.com/) is a URAC-accredited Independent Review Organization (IRO) serving insurance payers, providers, TPAs and claims managers nationwide. Reviews are conducted by board-certified physicians in active practice. AllMed’s growing customer base includes premier organizations, such as Educator’s Mutual Life, IMS Managed Care, Tenet Healthcare Corporation, HealthGuard, several Blue Cross Blue Shield organizations, TriWest Healthcare Alliance, Allianz and many other leading health care payers.

Salk scientist Ron Evans wins 2006 Gairdner Award for his discovery of hormone sensors From: http://www.eurekalert.org/pub_releases/2006-04/si-ssr040306.php

Public release date: 5-Apr-2006

Contact: Gina Kirchweger
858-453-4100 x1340
Salk Institute

Salk scientist Ron Evans wins 2006 Gairdner Award for his discovery of hormone sensors

La Jolla, CA - Ronald M. Evans, Ph.D., professor and head of the Gene Expression Laboratory of the Salk Institute for Biological Studies, has been named a 2006 winner of the prestigious Gairdner Award for his pioneering research into nuclear hormone receptors.

The Gairdner, Canada's highest scientific honor, recognizes medical science leaders whose accomplishments have advanced the frontiers of knowledge. The Gairdner Award in Canada is comparable to the Lasker Award in the United States, both being the highest scientific honors in their respective countries and often the precursors to the Nobel Prize" said Dr. Richard Murphy, President and CEO of the Salk Institute. Dr. Evans received the Lasker Award for Basic Medical Research in 2004 and, in 2005, the Grande Médaille d'Or, France's highest scientific honor.

Dr. Evans' work brought to light the common mechanism by which a diverse group of hormones and vitamins - steroid hormones, thyroid hormones, and fat-soluble molecules such as vitamins A and D - control the body's metabolism, development and reproduction. Scientists had known since the early 1900s that hormones directed organ physiology, but, until Dr. Evans' discovery, they had no idea how the minute amounts of hormones produced by the body actually triggered the changes.

Because nuclear receptors wield such physiological power, their discovery provided a multitude of targets for clinical scientists to develop new, more effective, and safer drugs. As a result, Dr. Evans' technology has been used to discover more than half a dozen drugs for cancer, diabetes and heart disease, with many more on the way.

In 1985, Dr. Evans discovered how cortisol, a steroid hormone that regulates glucose metabolism, accomplishes its mission. Like a messenger carrying an urgent message, cortisol sweeps into a cell's nucleus where it is met by molecules called nuclear receptors. They grab the cortisol molecules and together they clamp down in specific places on the chromosomes, where they tweak the activity of genes.

The discovery of the receptor for cortisol provided the much-needed code to hormones' puzzling mode of action and opened the door to future discoveries. Following his discovery, Evans, and others in his field began hunting for more hormone sensors by using the cortisol receptor gene as a blueprint.

To date, researchers have turned up nearly 50 related nuclear receptors that function as on/off switches for genes as soon as they bind to messenger molecules. Prior to Dr. Evans' research it was not known that fat-soluble vitamins, steroid hormones and dietary fats use a common strategy to communicate with genes inside a cell's nucleus.

Two of the receptors that Dr. Evans discovered, PPAR gamma and PPAR delta, play key roles in regulating the storage and burning of fat. Mice that are genetically engineered to produce an overactive version of PPAR delta burn dietary fat at very high rates and have stronger slow-twitch muscle mass. When placed on a rodent-sized treadmill, these genetically engineered "marathon mice" run twice as far as their normal counterparts.

Dr. Evans' lab's research on vitamin A signaling has been key to defining the vitamin's role as a gene regulator and its central role in orchestrating embryonic development and adult physiology. Following these discoveries, vitamin A therapy became a "magic bullet" for treating people with acute promyelocytic leukemia.

Evans also discovered that the anti-diabetic drugs Actos and Avandia, the only approved drugs known to make body cells more sensitive to insulin, work by activating another nuclear receptor, namely PPAR gamma. Many, more potent, members of this drug class are currently under development.

One particular nuclear receptor, also known as SXR (short for steroid and xenobiotic receptor) is responsible for the majority of harmful drug - drug interactions. Since this crucial finding emerged from Dr. Evans' lab in 1993, pharmaceutical companies increasingly rely SXR screens to improve the safety of new drugs.

Dr. Evans' current research focuses on deepening our understanding of the molecular basis of obesity-related diseases such as diabetes and syndrome X, a disorder characterized by high blood pressure, heart disease and insulin resistance.

About Dr. Evans:

Born and raised in Los Angeles, Dr. Evans earned his bachelor's degree in bacteriology and his doctorate in microbiology and immunology from the University of California, Los Angeles. After completing a postdoctoral research fellowship at Rockefeller University in New York, he was recruited to the Salk Institute in La Jolla. A faculty member at Salk since 1978, Dr. Evans is a Howard Hughes Medical Institute Investigator and holds the Salk Institute's March of Dimes Chair in Developmental and Molecular Biology.

Dr. Evans has received many honors in addition to the Gairdner Award. Last year, he received the Grande Médaille d'Or (Grand Gold Medal), France's highest scientific honor. In the fall of 2004, he shared the Lasker Award for Basic Medical Research with two other scientists. He has been elected to the National Academy of Science, Institute of Medicine as well as the American Academy of Arts and Sciences. He is also the past recipient of the California Scientist of the Year Award; General Motors Sloan Award for Cancer Research; March of Dimes Prize in Developmental Biology; Bristol-Myers Squibb Award for Distinguished Achievement in Metabolic Research; and the Keio Prize in Medicine. Dr. Evans' published studies are among the most frequently cited by the scientific community worldwide, according to the nonprofit Institute for Scientific Information.

About the Gairdner Foundation International Award:

The Gairdner is one of the most prestigious awards in all of science. Founded by the late Toronto businessman James Gairdner and now in its 47th year, the Gairdner Award recognizes medical scientists "whose seminal discoveries and major scientific contributions constitute tangible and significant achievement in biomedical sciences." Since its inception in 1959, 279 scientists have received the Gairdner, 65 of whom have gone on to win a Nobel Prize. The 2006 awardees were announced in Toronto today and will receive their awards at a gala dinner in October. For more information, go to: www.gairdner.org.

About the Salk Institute for Biological Studies: Internationally renowned for its groundbreaking basic research in the biological sciences, the Salk Institute was founded in 1960 by Dr. Jonas Salk, five years after he developed the first safe and effective vaccine against polio. The Institute's 59 faculty members are scientific leaders in the fields of molecular biology, neurosciences and plant biology.

Newest Bios:
To add or edit your bio, http://www.cushings-help.com/add_your_bio.htm
Adrenal Patients
Angela Angela has been free from adrenal Cushing's for two and a half years. Houston, TX
Esther Esther has small lesions in each
adrenal gland.
Stacie Stacie has been diagnosed with many illnesses. She had adrenal surgery March 23, 2006 Sioux City, Iowa
Not Yet Diagnosed Patients
Sue C Sue C is not yet diagnosed. West Mifflin, PA
Summer Summer is not yet diagnosed but has many symptoms. Kansas
Susan P Susan P believes that her young son might have Cushing's although he has not yet been diagnosed. Tennessee
Trisha Trisha is from Texas. She isn't yet diagnosed but has tested positive on several tests so far. Wylie, TX
Pituitary Patients
Ana Ana had her first pituitary surgery in May of 2005 and her second in August of 2005. Miami, Florida
Joanne Joanne had pituitary surgery in July 2005 and it's thought that she may have a recurrence. England
Robert Robert diagnosed himself with Cushing's. He has had pituitary surgery January 9, 2006. Memphis, Tennessee
Samantha Samantha is not yet diagnosed.  She has a low attenuation enlargement of left adrenal Virginia
Sue's Sister Sue's sister has been diagnosed with Cushing's. She had a a rare reaction to the Petrosal Sinus Sampling test and is in Intensive Care at a NY hospital. NY
TracyS TracyS had pituitary surgery in March, 2006. Pennsylvania
To add or edit your bio, http://www.cushings-help.com/add_your_bio.htm

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, President 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."

The Cushing's Store
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Order Cushing's Awareness Silicone Bands here.

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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:

April 28, Washington DC Metro Area, Saturday lunch, More info here »

May 14-19, Fun'n'Sun Cushie Cruise to Bermuda, More info here »

June 24-27, 2006, ENDO 2006, Boston Convention & Exhibit Center.
Plenary Lectures Announced for ENDO 2006,   Boston, Massachusetts, June 24-27

ENDO 2006 not only delivers four full days of the latest advances in endocrine research and clinical practice, but also plenary lectures by sixteen of the world's foremost leaders of endocrinology. For up-to-date information on ENDO 2006, from the scientific program to registration, visit www.endo-society.org/endo06
The 2006 plenary topics and speakers are:

* The WHI Hormone Therapy Trial:  Timing is Everything
     JoAnn Manson MD, DrPH, Brigham & Women's Hospital/Harvard Medical School

* Estrogen & Cardiovascular Disease
     Michael Mendelsohn, MD, FACP, Tufts University/New England Medical Center

* Diabetes, Obesity & the Brain
     Michael Schwartz, MD, University of Washington-Seattle/Harborview Medical Center

* Neuroendocrinology of Critical Illness
     Greet Van den Berghe, MD, PhD, Katholieke Universiteit Leuven, Belgium

* Prolactin & its Receptor: More than Just the Lactation Mediator
     Paul Kelly, PhD, Faculté de Médecine Necker, INSERM, France
     (Gerald D. Aurbach Award Lecture)

* Thyroid Hormone & Brain Development
     Juan Bernal, MD, PhD, Instituto Investigaciones Biomedicas, Madrid, Spain

* Steroidogenesis: General Lessons from Rare Diseases
     Walter Miller, MD, University of California-San Francisco
     (Clinical Investigator Award Lecture)

* Genetic Pathways of Cell Death
     Tak Mak, PhD, University of Toronto, Ontario, Canada

* Metabolic Syndrome
     Richard Bergman, PhD, University of Southern California

* Nuclear Receptors & Endocrinology
     Mitchell Lazar, MD, PhD, University of Pennsylvania School of Medicine
     (Edwin B. Astwood Award Lecture)

* Estrogens
     Benita Katzenellenbogen, PhD & John Katzenellenbogen, PhD, University of Illinois
     (Roy O. Greep Award Lecture)

* Fetal Basis of Adult Disease
     Susan Ozanne, PhD, University of Cambridge, United Kingdom

* Embryonic & Neural Stem Cells: Potential for Spinal Cord Repair & Other Disease States
     John Kessler, MD, Northwestern University

* Applications of Biomaterials to Regenerative Medicine
     Robert Langer, ScD, Massachusetts Institute of Technology

* Cloning
     Gerald Schatten, PhD, University of Pittsburgh School of Medicine

* Sex Determination
     David Page, MD, Massachusetts Institute of Technology

For up-to-date information on ENDO 2006, from the scientific program to registration, visit www.endo-society.org/endo06

June 2-5, 2007, ENDO 2007, Toronto, Canada, Metro Toronto Center. More info as it becomes available.

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

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