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March 29, 2006
 
 
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In This Issue:HappeningsSite NewsMeetingsChat Info
Our Condolences to the family of Sue Koziol (SuziQ)
Cushing's Awareness Day Forum in Oklahoma City, OK April 7, 2006.
The singing neuropathology professor
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
Preorder the CUSH Cookbook
Upcoming Meetings in the Washington, DC metro area and Oklahoma City. ENDO 2006, Boston Convention & Exhibit Center.
Read all about them below.
News!



CUSH Founding President, Sue Ann Koziol (SuziQ).


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

There will be an online memorial for Sue during the Cushing's Awareness Day Medical Forum in Oklahoma, April 5-8, 2006. For more information, please visit this topic on the message boards

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




From the message board post at http://cushings.invisionzone.com/index.php?
showtopic=14273&pid=117311&st=0&#entry117311

CUSH proudly presents a Cushing's Awareness Day Forum in Oklahoma City, OK on April 5-8, 2006.

Cheryl Farrar, Oklahoma CUSH Representative, has been working hard to put together a medical forum to celebrate Cushing's Awareness Day. She has arranged for two doctors to speak (a neurosurgeon and an adrenal surgeon) and has a message in to a third doctor. She also is going to ask Senator Inhofe if he would speak for us at the beginning of the forum, so that we may thank him for the Senate Proclamation re:Cushing's Awareness Day.


I'd like to say a special 'thank you' to Cheryl for putting this forum together for us.

More info here: http://cushings.invisionzone.com/index.php?
showtopic=14273&pid=117311&st=0&#entry117311


Order the CUSH Cookbook!

CUSH Cuisine! $10.00
Click here for more info

 


News:
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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.

Singing neuropathology professorfrom http://record.wustl.edu/news/page/normal/6792.html

The singing neuropathology professor

Arie Perry puts a new twist on old songs to help students learn about brain disorders

By Beth Miller

It's not likely many medical students can say they learned music appreciation in a neuropathology class — except for those in Arie Perry's class.

Perry, M.D., associate professor of pathology and immunology in the School of Medicine, takes songs such as "Give Me One Reason," "Desperado" and "Danny's Song" and adds new lyrics to explain complicated neurological disorders such as oligodendroglioma, strokes and pituitary adenoma.

Perrysing
Photo by Robert Boston
Arie Perry, M.D., sings one of the songs he wrote to second-year medical students in neuropathology. "He has established himself as one of the rising stars in neuropathology," says colleague David H. Gutmann. "He is recognized internationally as an expert in brain tumors."

Students seem to anticipate the end of the lectures, when Perry pulls out his guitar and sings one of his songs on a lecture topic. He provides the lyrics and mp3 files to students so they can follow along.

"It's fun for the students and fun for the professor as well," Perry says. "I enjoy seeing people perk up, doing something other than hours of lectures."

The soft-spoken Perry began writing songs about neuropathology as a resident at the University of Texas-Southwestern Medical School, when an attending physician at a conference jokingly challenged the residents to be more entertaining. Perry took it to heart and wrote his first song, "Schwannoma," about the peripheral nerve tumor. By the end of his song, Perry had attracted two or three times more people into the room from those passing by who wanted to listen.

"Later on, when I began teaching medical students, I found the songs to be a useful tool for people with better musical memories than rote memories," Perry says. "There are a lot of good musicians in medicine."

When writing songs on neuropathology, Perry works to find several pieces that might fit the rhythm of the topic. "It's a challenge to get the longer medical terms to fit into a preexisting format," he says.

That rings true in the "Pituitary Adenoma" song, sung to the tune of "Danny's Song," recorded by Kenny Loggins in the 1970s:

"Patient presents to you with bitemporal hemianopsia

Prolonged amenorrhea, and galactorrhea

MR imaging reveals a sellar neoplasm, pushing up the optic chiasm,

From prolactin forming cytoplasm

Pituitary adenoma, with your disrupted reticulin stroma

You've lost the microacinar pattern of the normal gland

Your cells appear so monomorphic, with nuclei so round and perfect

And salt and pepper nuclear chromatin... "

Perry, who has won several teaching awards — including the distinguished service teaching award from three classes and the professor of the year award from the Class of 2007 — says many of the songs he uses were popular before most of his students were born, which presents more of a challenge every year as students get younger. "But I hope that they enjoy it enough to look up the original," he says.

Robert E. Schmidt, M.D., Ph.D., professor of pathology and immunology and director of the division of neuropathology at the School of Medicine, said he was surprised at first that Perry's students had taken to the end-of-lecture songs.

However, he was soon convinced by the warm reception of Perry's songs by normally intensely focused medical students.

One year, students even held up lighters, a typical rock concert gesture calling for an encore, during one of Perry's songs, Schmidt said.

Perry's musical background comes from taking folk guitar lessons while growing up. He also was the lead singer in a rock band in high school, in which he sang songs by The Who, Journey, Rush, The Beatles and ZZ Top. He also sang in the school choir and started taking voice lessons at that time, subsequently spending more of his efforts on classical music.

Perry and his wife, Zenobia, also a musician, sang their vows to each other at their 1990 wedding, which featured mostly original music.

These days, Perry also sings professionally as associate principal tenor for the American Kantorei and its Bach at the Sem series at Concordia Seminary in Clayton. He also sings solos with other St. Louis choirs or at weddings occasionally.

"I get more nervous at other peoples" weddings than I did at my own," Perry says.

Zenobia Perry is the pianist at a local church and has recorded a CD of original music.

Perry family
Courtesy Photo
Arie Perry, daughter, Jaclyn, 10, wife, Zenobia, and son, Ryan, 13, relax at their Chesterfield home.

The musical talent continues in their daughter, Jaclyn, 10, who plays piano and participates in competitions. The Perrys also have a 13-year-old son, Ryan, who has autism and a good memory for lyrics, Perry says.

The Perry family is involved with the National Alliance for Autism Research, based in Princeton, N.J. Perry is on its executive committee for the Autism Tissue Program, which provides banked brain tissue from individuals with autism to researchers worldwide. Zenobia even wrote a theme song for one of the organization's fund-raising walks.

The Jerusalem-born Perry and his family moved to the United States when he was 6 years old. His father, Gabriel Perry, an obstetrician-gynecologist, did a residency at Albert Einstein College of Medicine at Yeshiva University in New York. The family moved to Texas when Perry was 10.

Perry completed his undergraduate work at the University of Texas in 1986 and medical school at the University of Texas-Southwestern in 1990. He also did his residency at UT-Southwestern.

He did fellowships in surgical pathology and neuropathology and conducted research at the Mayo Clinic in Rochester, Minn., one of the premier tumor pathology programs nationwide, before arriving at Washington University in 1998.

Perry's research focuses on tumors of the brain and central nervous system, which can be difficult to treat. He is involved in translational research aimed at finding new diagnostic, prognostic and predictive biomarkers to be used in managing brain tumor patients.

"It's a complicated type of problem, and there are so many different types," he says.

Some of his work during his fellowship at the Mayo Clinic resulted in new grading criteria for meningiomas, although commonly perceived to be benign overall, subsets are aggressive and clinically challenging tumors.

Those criteria have been adopted by the World Health Organization's Tumors of the Nervous System publication, and are used as a reference for brain tumor diagnostic pathology around the world.

Arie Perry

Title: Associate professor of pathology and immunology; medical director of the Anatomic Pathology Fluorescence in situ hybridization (FISH) lab

Years at University: Eight

Research interests: Tumors of the brain and central nervous system; finding new diagnostic and prognostic markers to be used in managing brain tumor patients

Hobbies: Singing, writing songs, snow skiing, scuba diving

Perry also is medical director of the Anatomic Pathology Fluorescence in situ hybridization (FISH) lab, which is used to identify clinically useful chromosomal abnormalities in a wide variety of tumors, most notably gliomas (a malignant type of primary brain tumor), breast cancer and subsets of lymphoma and soft tissue sarcoma.

"As a colleague, Arie is just what you'd want," Schmidt said. "He's an expert, who has a lot of drive and is a perfectionist. He also has a good sense of humor, which you have to have in this field."

David H. Gutmann, M.D., Ph.D., the Donald O. Schnuck Family Professor of Neurology and professor of pediatrics and of genetics at the School of Medicine, said Perry is wonderful to work with and a valuable colleague.

"He has established himself as one of the rising stars in neuropathology," said Gutmann, who also is the co-director of neurooncology at the Siteman Cancer Center and director of the Neurofibromatosis Center at the School of Medicine. "He is recognized internationally as an expert in brain tumors."

Gutmann and Perry have collaborated for many years to refine their ability to genetically characterize brain tumors. Together, they hope to develop molecular signatures for brain tumors that might predict their responses to therapy.

In addition to his teaching and research, Perry provides consults for difficult surgical cases sent in from medical facilities, mostly throughout the United States and Canada, but also from other countries.

Schmidt said Perry is one of the best young tumor neropathologists in the country. "His burgeoning consult service reflects his growing reputation," Schmidt said.

Although Perry doesn't work directly with patients, he will often take a clinical problem back to the lab for research.

"It is still rewarding to know that you are helping the patient in something that will lead to the right management of the problem," Perry says.

 


Newest Bios:
To add or edit your bio, http://www.cushings-help.com/add_your_bio.htm
Adrenal Patients
Addiegirl Diagnosed with Addison's 2 1/2 years ago. She also has some Cushing's symptoms, possibly from the steroids she takes. Maryville, Tennessee
Catherine G Catherine G started noticing problems after an early miscarriage. She has had a BLA and also had an ACTH-producing dermoid cyst removed. Norwich, England
Chantal Chantal was diagnosed with Cushing's Syndrome in 2001 and had an adrenalectomy in 2002 Lees Summit, Missouri
Courtney Courtney is having a BLA today (March 29, 2006) Westminster, Colorado
Hollie Hollie updated her bio 2/1/2006. She had her left adrenal removed two years ago but she still isn't feeling well. Virginia
Linda A Linda A has had adrenal surgery. West Hartford, CT
     
Not Yet Diagnosed Patients
Brittany Brittany is  not yet diagnosed but has many Cushing's symptoms and has had other serious hormonal issues. Tampa, Florida
Cara Cara  is not yet diagnosed. She believes her Cushing's symptoms started when she was pregnant. Oklahoma
Dawn Dawn is not yet diagnosed, but has now posted an extensive bio Pittsboro, NC
Deb Deb is not yet diagnosed. Arkansas
DianeO DianeO isn't yet diagnosed. South Dakota
Ed Ed is not yet diagnosed. Bethesda, Maryland
Elaine Elaine is  not yet diagnosed. Her new doctor suggested Cushing's and she is doing testing. Edmonton, AB, Canada
Gayle Gayle is not yet diagnosed. Deltona, Florida
Glenna Glenna is not yet diagnosed Kemp, Texas
Heather Heather is not yet diagnosed. Texas
JCFern JCFern is not yet diagnosed. She has a great many Cushing's symptoms. Luxemburg, Wisconsin
Juana Juana has updated her bio. Ashtabula, Ohio
Laurie Laurie  is not yet diagnosed. She first heard of Cushing's on Sharmyn McGraw's episode of Mystery Diagnosis. Minnetonka, Minnesota
LoriDory Lori is not yet diagnosed. Modesto, CA
Maggie Maggie is not yet diagnosed. Quartzsite, Arizona
Monica Monica is not yet diagnosed, but her endo suspects that she has Cushing's. Austin, Texas
Morgan Morgan is not yet diagnosed Huntsville, AL
Radar Radar is not yet diagnosed. He has had many symptoms of Cushing's Gig Harbor, WA
Sallyls Sallyls is not yet diagnosed. She has many symptoms and is doing testing for Cushing's. Yorkshire, UK
TinaC Tina C started having health issues back in 1999 but has not yet been diagnosed with Cushing's. High Point, NC
     
Pituitary Patients
Cathy Cathy had the left side of her pituitary gland removed and a BLA. Her bio was updated 2/2/2006. Cathy has been through 2 cycles of IVF fertility treatment and the second one worked. She is due August 10th 2006.  New Zealand
Darlene Darlene is on medication to control her cortisol until pituitary surgery. Windsor, Ontario, Canada
Debbie Z Debbie Z had her first pituitary surgery in February 2002 and her second February 2006. Austin, Texas
HDiana HDiana has a prolactinoma (pituitary tumor). Michigan
Heide Heide  has been diagnosed with a pituitary tumor which was a misdiagnosed lymphocytic hypophysitis. She has also had 12 radiation treatments to her pituitary area. New Orleans, Louisiana
Jaimie Jaimie had pituitary surgery at UVa on March 10, 2003. Her bio includes pictures. Jaimie updated her bio in December 2005 after another surgery November 17th, 2005. San Diego, California
Jeff B Jeff B has had pituitary surgery. They believe that there might still be some tumor left. Portland, Oregon
Jo Jo's young daughter has suffered from Cushing's symptoms for the last 5 years. Scotland
Joanie Joanie had a pituitary tumor removed on December 13, 2005 Orange County, New York
Lee B During the course of diagnosing Cushing's she found that she had a blood clotting disorder called VonWillibrand’s.
She saw 16 different Drs. offices during the 18 mos. between the time she was trying to figure out what she had, through June 2005 when she had her last kidney stone surgery: 2 family practice, 1 optometrist, 3 ophthalmologists, 1 podiatrist, 1 rheumatologist, 1 internist, 2 endocrinologist, 1 hematologist, 3 neurosurgeons, 1 urologist.
Spring City, Utah
Lynette Lynette has a pituitary tumor that has not been removed. Colorado
Mandy Mandy is looking for a surgeon to perform a second surgery. Brookhaven, Mississippi
Melody's husband Melody's husband was diagnosed with a pituitary tumor in early March, 2006 Bellingham, Washington
Michelle Michelle had her pituitary removed January 25, 2006. Panama City, Florida
Myra Myra had pituitary surgery (transsphenoidal resection) on January 10, 2006 and she feels that she is getting worse. San Antonio, Texas.
Nicole Nicole is 16 years old and recently found out she had Cushing's Yarmouth, Nova Scotia
Rickie Rickie had a pituitary tumor removed in May 1995 and in October 2000 had most of the pituitary gland removed followed by radiation therapy. Southern California
Sam Samantha noticed a weight gain when she started University. After 3 years she had a pituitary tumor removed and she's having trouble getting off steroids. born in Burlington, Ontario currently going to school in London, Ontario
SherryC Updated
SherryC is now officially diagnosed. She had pituitary surgery March 23, 2006.
Oregon
Suzanne Suzanne had transphenoidal surgery November 13, 2005 Gardnerville, Nevada
Todd Todd updated his bio to let us know he had moved Knoxville, TN
TracyY TracyY  has had pituitary surgery. Vancouver, BC, Canada
    
Steroid Induced Patients
Ivy Ivy has steroid-induced Cushing's from prednisone long term for possible adrenal insufficiency, asthma, small bowel dysautonomia, autonomic dysfunction, and an undifferentiated mixed connective tissue disease. Ft. Lauderdale, FL
Judy Judy has been diagnosed with Grave's Disease and Thyroid Eye Disease. Because of these she has been taking prednisone and believe she has steroid-induced Cushing's now. Nashville, Tennessee
     
To add or edit your bio, http://www.cushings-help.com/add_your_bio.htm


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Upcoming Conventions, Meetings and Seminars:

March 30, Washington DC Metro Area, Third Thursdays, More info here »

April 6-8, Oklahoma City, OK, Cushing's Awareness Day Medical Forum, More info here »

April 28, Washington DC Metro Area, Saturday lunch, 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:
Please join us in the Chat Room TONIGHT at 9 PM Eastern.

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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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