• 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.
Meetings in Australia
As part of Pituitary Awareness Week, 31
July - 8 August 2004, the Australian Pituitary Foundation Ltd will be
presenting the following seminars.
The New
South Wales branch will be presenting a Free
Public Seminar on Saturday 31 July 2004 at
The Garvan Institute of Medical Research, 384 Victoria St,
Darlinghurst from 9.00am –12.30pm.
Speakers - Dr Kerry Lee Milner, Dr Udo
Meinhardt, Mrs Melissa McDonagh, Dr Jerry Greenfield, Dr Katherine Samaras, Dr
Morton Burt, Prof Ken Ho, Prof David Handelsman.
Theme -
Replacement Needs of the Pituitary Patient
(Featuring how pituitary hormone deficiencies are diagnosed,
care of the child with pituitary hormone deficiencies, hormone replacement
therapies and fertility ).
Topics- Evaluation of Pituitary Function,
Caring for the Child with Pituitary Problems, The Needs of the Pituitary
Patient - A Patient's Perspective, Managing the Pituitary Patient - An
Endocrinologist's Perspective, Sex Hormones, Adrenal Hormones, Growth Hormone,
Male Fertility.
Morning Tea sponsored by Public Trustee NSW.
10th Anniversary APF Lunch afterwards at a local restaurant, Cafe Sel et
Poivre.
The South Australia
Branch will be presenting a
Free Public Seminar on Saturday 31 July 2004 at
The Royal Adelaide Hospital, North Terrace, Adelaide from
9.00am –1.00pm.
Speakers – Prof David Torpy, Dr Ian Chapman,
Dr Steve Santoreneos, Dr Danny Roos, Assoc Prof Gary Witters, Prof Michael
Horowitz and Mr Noel Biggins, Ms Kerrie Dunstan, and two patients speaking
on their experiences living with Acromegaly and Cushing's Disease.
Topics -Pituitary Presentation
and Investigations, Pituitary Medical Treatment, Pituitary Surgery,
Pituitary Radiotherapy, Obesity after Pituitary Surgery, and Coping with
Chronic Illness, as well as a panel discussion at the end.
Afterwards lunch will be provided with the
generous support of Ipsen Pharmaceuticals.
The Queensland branch will
be presenting a Free Public Seminar on Friday 13
August at The Princess Alexandra Hospital,
Ipswich Road, Woolloongabba from 5.30pm – 9.00pm.
Speakers - Ms Fiona McIver,
Dr Ross Cuneo, Dr Margaret Williamson, Dr Clare Boothroyd. Theme - Sex Hormone Replacement (both sexes), Fertility
& Sexuality.
Topics -
Overview of the Pituitary Gland, Male Reproductive Health in Patients with
Pituitary Disease, Female Sexuality: 'Libido or Not Libido', Getting
Pregnant after Pituitary Disease - for Guys and Gals.
Refreshments provided with the generous support of
Novartis Pharmaceuticals.
These
seminars provide an opportunity for
people with pituitary concerns to learn more about issues specific to the
function of the pituitary gland whilst at the same time meeting other people
with similar issues. They
are an ideal chance for social connections to be made.
Located at the base of the
brain, the pituitary gland is commonly referred to as the master gland because
of the role it plays in controlling the function of all aspects of the body’s
vital endocrine glands. These glands produce our hormones, complex secretions
which define the differences between men and women, control our fertility, our
sex drive, and virtually make life worth living.
This email contains the web
addresses for the flyer and maps of the Sydney seminar. They will be sent as
attachments in the next email, along with
information about how to RSVP.
We would appreciate it if
you could distribute the flyers to pituitary
patients and other people who you
think may be interested and/or health practitioners who
may be involved with the diagnosis and treatment of pituitary patients.
Please
feel free to photocopy and mail out the flyers
for this purpose.
The seminars are
aimed at patients, families and carers who are interested in learning more
about pituitary management. Health professionals, students and the general
public are welcome to attend. There is no charge and refreshments
are provided.
I know many of you live in
other states, but you may still be interested in hearing about what the
various states are doing, or may know of someone in other
states who would be interested.
To attend the Garvan seminar:
Phone
Liz Eassie on 02 9295 8110.
To attend the
APF Lunch:
There will be a lunch,
organised separately by the APF, after the seminar to celebrate the 10th
Anniversary of the APF and to give seminar attendees an opportunity to
socialise and discuss the seminar. You are
also welcome to come to lunch even if you weren't able to make it to the
seminar.
It will be held at
"Cafe Sel et Poivre", across the road from the Garvan. (The
name is French for Salt and Pepper. 263 Victoria St, Darlinghurst, 02
93616530)
RSVP to the APF lunch SEPARATELY
to the seminar by 26 July.
Kathryn Skelsey, Secretary Australian Pituitary Foundation Ltd
PO Box 327
ALLAWAH NSW 2218
Australia
Ph: 61-2-9580-6050
Fx: 61-2-9585-2642
Mb: 0408-912-248
• 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.
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.
• The new message boards are open! Not only are the boards completely different, but they're on a new server, with a new URL. So far, everyone has enjoyed all the wonderful new features. Check out the new boards at http://boards.cushings-interactive.com/invboard/
For people who were members of the older boards, they will be open as archives for a few more days, if you have a favorite post you would like to print out or repost on the new boards.
A new Photo Gallery has been added, as well as other enhancements to the boards.
The Board Home, accessable from a link at the top of the Message Boards is one of my favorite new features.
• A 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.
• 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."
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.
