What's New?

September 22, 2004

To read the or the archived newsletters please click here.

In This Issue: Happenings Site News Meetings Chat Info

All about the October CUSH Convention
Upcoming PDES Meetings in Michigan
NIH Opens New Clinical Research Hospital
Upcoming Local Meetings
Read all about them below.


Next Online Newsletter will be Wednesday, September 29
read archived issues here »
News!

Join Barbara Craven, Ph.D., RD, LD
Wednesday, October 13th at 9 PM Eastern

in the Cushing's Chat Room

Barbara Craven, Ph.D., RD, LDBarbara Craven, Ph.D., RD, LD is a licensed dietitian in Washington, DC.  She currently has a practice treating patients with HIV/AIDS and teaching general nutrition.  For many years she has had an interest in holistic nutrition and often uses natural therapies in her practice.  

She received her Ph.D. in Food Science from Texas A&M University in 1980 and her RD in 1981.  The first years of her practice, she taught at the University level, then went into private practice counseling weight loss and athletic nutrition.  Several years ago she became interested in HIV nutrition and now dedicates her skills to helping the under served manage this devastating disease through diet and natural therapies. She is currently helping write an Evidenced Based Guide for Medical Nutrition Therapy in HIV/AIDS, is writing a cookbook for HIV/AIDS nutrition, is on the Ryon White Working Committee in Senator Ted Kennedy's Office, is Chair of the DC Area Nutrition Alliance and has been invited to speak on the latest developments in HIV nutrition at the National Ryon White Review Meeting this year in Washington, DC.

Barbara's link to us is that she has had Cushing's.  Like many, hers was intermittent and symptoms accumulated over many years before she was diagnosed.  In November of 2003 she underwent transphenoidal surgery and her entire pituitary was removed.  Many of the symptoms you have experienced or are experiencing, she has also.  Many of us met Barbara at the UVA Pituitary Days Conference in April, 2004.

Barbara will answer our questions about natural therapies and diet that helps alleviate symptoms and manage weight in Cushing's disease.

Join Barbara Craven, Ph.D., RD, LD
Wednesday, October 13th at 9 PM Eastern

in the Cushing's Chat Room

This will be a protocol chat:

PROTOCOL INSTRUCTIONS FOR GUEST CHATS

  • Once the guest is introduced, random chatting is not permitted.
  • If you have a question for our guest, type only
    a question mark - ? - to screen
  • Your name will be placed in a queue and you will
    be called on in turn.
  • Please restrict yourself to one question
    at a time as others are waiting to ask theirs.

Thursday and Friday, October 21 and 22, 2004
Saturday, October 23, 2004, Optional General Jackson Riverboat Cruise

2004 Annual CUSH Convention


Join us in Nashville for this exciting event at the
Vanderbilt Ingram Cancer Center!

Due to unforeseen circumstance, Dr. Lewis Blevins is not going to be able to speak at our Conference on October 22, 2004. However, he is providing us with 2 video lectures specifically for our conference. His topics will be: So....You Have Cushing's....What's Next? and Evaluation & Management of Cushing's Disease when Surgery Has Failed...

We regret that Dr. Blevins can't be with us for the conference. However, we are most confident that our remaining speakers, will excel and we will have a great conference as anticipated.

You still have time to register so get your registration form in and lets all look forward to having a great time in Nashville. It's always a rewarding experience to meet other Cushing's Patients.

Dr. Scott C Isaacs will also be among the speakers. Dr. Isaacs' topic will be "Coping With Cushing's Through Diet and Lifestyle". More info here »
Register for the Conference here »

Room Availability:
Nashville Mariott @ Vanderbilt University
Rate: $99.00 per night plus appropriate taxes
Call for Reservations: 1-615-321-1300
Room Reference is: Cushing's Disease Conference

Please Note: There is a limited number of rooms with two beds so if you plan to share your room, please reserve early. There is a $17.00 fee for parking. Carpooling is recommended.

For more information on the Marriott and the area check the following: The Marriott at Vanderbilt

Agenda:
Thursday October 21, 2004
9:00 AM: CUSH Officers Meeting, Crescent Room @ Marriott
11:00 AM - 5:00 PM: Open Forum Cushing's Patient Meeting,
Crescent Room @ Marriott

**Usually when we get together we try to come to a decision about where we all can dine together.

Friday October 22, 2004
8:30 AM - 5:00 PM: CUSH Conference at
Vanderbilt Ingram Cancer Center
Preston Research Building
8th Floor Conference Room

Speakers:
Dr. Lewis S. Blevins (on video)
Dr. Scott D. Isaacs
Dr. Jessica S. Devin
Sharmyn McGraw
*TBA possible guest speaker*

Conference Includes Luncheon

Please remember this is a limited seating facility. The interest in this conference has been overwhelming. Please send fees early. Spouses are also invited to attend.

$50.00 Fee per person to attend which must be paid by September 1, 2004. Acknowledgement will be sent to you when fee received. You will receive your name badge at the door.

Please remit to:
CUSH Organization
Cathy Gifford
PO Box 1843
Florence, AL. 35631-1843
Or Register for the Conference here »


Saturday October 23, 2004
Optional General Jackson Riverboat Cruise
Reservations and payments must be made in advance as the seating is limited.



PDES Meetings PDES Patient meeting on September 25th, 2004.

"Keeping wind in your sails"
Guest Speaker: Bruce Hillenberg, Ph.D

Dr. Bruce Hillenberg has practiced clinical psychology for the past 25 years. His focus is on the psychological management of acute and chronic physical illness. He has a strong interest in helping individuals maintain quality of life in the face of the challenges and angst of illness.

Topics of interest to patients, and family members, dealing with chronic physical illness.

  • Coping on a daily basis
  • Managing worry
  • Maintaining quality of life
  • Coping with anger and frustration
  • Being assertive with healthcare professionals
  • Communicating with others

Time: 10:00 to 12:30
Location: West Bloomfield Library
4600 Walnut Lake Road
West Bloomfield, MI 48323 (USA)

Map and directions for the West Bloomfield Library http://www.wblib.org/aboutus/findingyourway.html

Please RSVP by phone or email. 810 227-2715
Email: PDES@comcast.net

There is no fee to attend. However donations are necessary for educational programs. For those who can help the PDES with our patient programs please send your donations to:

PDES
P.O. Box 571
Brighton, MI 48116

We look forward to meeting and your help is greatly appreciated!


Patient Symposium
October 9th 2004
Rochester Hills, Michigan, USA

Treatment for Growth Hormone Disorders
Social Security Disability
The Effects of Chronic Illness

Guest Speaker: Abdul K. Al-Kassab, M.D., Ph.D
Assistant Clinical Professor at Wayne State University

Feature topic: Treatment for growth hormone disorders
Acromegaly and Growth Hormone Deficiency

  • Symptoms
  • Testing
  • Treatment

Topic: Social security disability:

Guest speaker: Brenda Anderson, representative for DSI, Disability Services, Inc.

  • Do you qualify for benefits?
  • How to apply
  • How to communicate with your physician about your health

Topic: The effects of chronic illness
Guest speaker: Bruce Hillenburg, Ph.D

How to communicate with friends and family
How to cope with long-term illness

Location:

Best Western ConCorde Inn of Rochester Hills
1919 Star Batt Drive
Rochester Hills, Michigan, United States, 48309

You may book hotel accommodations at www.concordeinnrochesterhills.com
Map and directions are available on the Best Western ConCorde Inn website.

Very Important! RSVP as soon as possible. Continental breakfast will be served at 9:30 a.m. Seating is limited.

To reserve seating, please call and leave a voice mail at (810) 227-2715 or email pdes@comcast.net

Please include your name, phone, and the number of people
that will be attending.




NIH OPENS NEW CLINICAL RESEARCH HOSPITAL
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institutes of Health

NIH Office of the Director (OD) http://www.nih.gov/icd/od/

CONTACT:
Don Ralbovsky
Bonnie Kinney
301-496-5787

NIH OPENS NEW CLINICAL RESEARCH HOSPITAL

WHAT:
The National Institutes of Health will open a new hospital totally dedicated to clinical research on Wednesday, September 22. The Mark O. Hatfield Clinical Research Center will provide a unique opportunity for clinicians, scientists, and patients to study and conquer both chronic and acute disease in the 21st century. This new 870,000-square-foot facility will connect to the existing NIH Clinical Center, which opened its doors to patients in 1953. In the 50 years since its opening, NIH has worked in partnership with more than 350,000 participants in clinical studies from every state in the U.S. and from around the world. Some advances include:

-- First cure of a solid tumor with chemotherapy
-- First chemotherapy for childhood leukemia and Hodgkin's disease
-- Discovery of evidence of a genetic component in schizophrenia
-- First use of nitroglycerin for acute myocardial infarction
-- First use of hydroxyurea to treat sickle cell anemia
-- First gene therapy
-- First successful replacement of a mitral valve
-- First use of AZT to treat AIDS
-- Development of screening tests for AIDS and hepatitis, which reduced the transmission rate of transfusion- transmitted hepatitis from 30 percent to near zero
-- MaryO and some great Cushing's Patients :)

More than 1,000 clinical studies will be conducted in the Mark O. Hatfield Clinical Research Center. The promise of prospective cures energizes scientists, clinicians, and patients today no less than in previous decades. This new hospital will continue to set the pace for developing the most promising medical advances, providing a synthesis of medical knowledge to radically improve human health. The proximity of labs, equipment, and patient care units in the new hospital will help to rapidly move biomedical laboratory findings into the mainstream of medical practice -- carrying on the "bench-to-bedside" tradition of the original NIH Clinical Center.

WHEN:
Wednesday, September 22, 2004, 10:30 a.m.

WHERE:
National Institutes of Health, Bethesda, Maryland

WHO:
Senior officials, researchers, and patients will be available to discuss the importance of this new hospital and the impact it will have, and to relay personal stories of triumph.

-- Tommy G. Thompson - Secretary, Department of Health and Human Services
-- Elias A. Zerhouni, M.D. - Director, National Institutes of Health
-- John I. Gallin, M.D. - Director, NIH Clinical Center
-- U.S. Rep. C.W. Bill Young - Chairman, Committee on Appropriations, U.S. House of Representatives

NOTE TO EDITORS:
Press credentials are mandatory. Press should enter at the Press Only Entrance, located at the front of the Clinical Research Center. Public affairs staff will register TV crews and reporters and distribute press kits, B-roll, and other materials. B-roll is available in English and Spanish. Highlights include NIH leaders, patient stories, aerial shots, and architectural footage. A press room will be available on Monday, September 20 at <http://clinicalcenter.nih.gov>.

This NIH News Release is available online at: http://www.nih.gov/news/pr/sep2004/od-16.htm



• In an upcoming Guest Chat, we will have Barbara Craven, Ph.D., RD, LD. Barbara's link to us is that she has had Cushing's.  Like many, hers was intermittent and symptoms accumulated over many years before she was diagnosed.  In November of 2003 she underwent transphenoidal surgery and her entire pituitary was removed.  Many of the symptoms you have experienced or are experiencing, she has also.  Many of us met Barbara at the UVA Pituitary Days Conference in April, 2004.

Barbara will answer our questions about natural therapies and diet that helps alleviate symptoms and manage weight in Cushing's disease. More information will be on the site and in a future Newsletter.


Dr. Roberto Salvatori at Johns Hopkins has received a large grant from NIH to study the consequences of lack of growth hormone and it's affects on heart function, bone density, muscle strength, and fat metabolism. It is a wonderful study but he has run into a problem with a delay in receiving the funding. It apparently had to go through the Brazilian Gov. which is where the study will take place in a population of dwarfs that genetically have no growth hormone (a perfect study sample). Receipt of the funds may be delayed anywhere from three to six months.

The study was scheduled to begin July 1 and an Endocrinology fellow, Dr. Danilo Fintini from Italy, is hired to do the research and begin July 12th, however there are no funds available yet to pay him. NIH grants require that the work be completed within a framework of time. To delay the project may cause a loss of the grant.

Any donation is tax deductible and greatly appreciated. $11,210 will be needed for the first three months and then another $11,210 for the next three months. This research when completed will help patients that are hypopituitary be treated with greater knowledge of the problem and insights in to how to help them recover strength, normal heart function and fat metabolism.

For more information about this study and Dr. Salvatori, in Word format: please click here to download.

Thank you for your consideration in this matter. Please do not hesitate to ask for more verification or information about the project. I look forward to hearing from you soon.


• 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


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."

Upcoming Conventions, Meetings and Seminars:
September 25, PDES Patient meeting. Guest Speaker: Bruce Hillenberg, Ph.D More info here »

September 26, Lake Geneva, Wisconsin Gathering More info here »

October 9, PDES Symposium on Growth Hormone Disorders, Social Security Disability, Effects of Chronic Illness More info here »

October 21-22, 2004 The 2004 CUSH Convention at Vanderbilt Ingram Cancer Center, Preston Research Building, Nashville, TN. Registration form: here.

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 new chatroom is available through http://www.cushings-help.com/chatroom.htm. Since this is our own room, you won't need to go into another area after first logging in. You'll be right there!

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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