Pituitary Patient Support Group Meeting

patient-support-meeting

 

Pituitary Patient Support Group Meeting!
Saturday–November 19th, 2016
“We will be Live Streaming on Facebook!!!”

Speaker: Garni Barkhoudarian, MD
Topic: “Advancements in Pituitary Surgery-Better Treatments, Better Quality of Life”
Meeting: 10:00am-11:00am
Breakfast Snack will be served 10:00am-11:00am
Lunch will be served 11:30am following the meeting
Family and Friends Welcome!
Please RSVP: Sharmyn McGraw at pituitarybuddy@hotmail.com or message on FB

16 Years of Help and Support.

happybirthday-2015

It’s unbelievable but the idea for Cushing’s Help and Support arrived 16 years ago tonight.  That’s a long time for anything online.

I was talking with my dear friend Alice, who ran a wonderful menopause site called Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I’m making some helpful differences in someone else’s life!

The message boards are very active and we have weekly online text chats, occasional live interviews, local meetings, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Of course, we now have a Facebook page and 2 groups.  Both are secret, so if you want to join, please email  or PM me for an invitation.

Other sites in the Cushing’s Help “Family”

maryo colorful zebra

Help Advance Research for Better Cushing’s Syndrome Treatment

clinical-trials

 

I am so passionate about Clinical Trials, especially for Cushing’s because I was only diagnosed in 1987 because I was a part of a clinical trial at the NIH.  In addition to helping myself, I knew I’d be helping other Cushies coming along after me – something positive I could do while I was at my worst.

I hope that others will consider doing Clinical Trials, if they qualify for them.  You never know who else you might help!

This trial is testing the safety and effectiveness of an investigational drug for the treatment of Cushing’s Syndrome. Under the supervision of qualified physicians, cortisol levels and symptoms of Cushing’s Syndrome will be closely followed along with any signs of side effects.

More about the study:

The study drug (COR-003) is administered by tablets.

  • There will be 90 participants in this trial
  • There is no placebo used in the trial

If you are interested, please find the full study details and eligibility criteria listed here.

Eligibility Criteria:

Participants must:

  • be at least 18 years old
  • have been diagnosed with endogenous Cushing’s Syndrome by a medical professional (not caused by the use of steroid medications)

Participants must not:

  • have been treated with radiation for Cushing’s Syndrome in the past 4 years
  • be currently using weight loss medication
  • have been diagnosed with uncontrolled hypertension, some forms of cancer, adrenal carcinoma, Hepatitis B / C, or HIV

Please complete the online questionnaire to check if you’re eligible for the trial.

If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.

Learn why I’m talking about Clinical Trials

Webinar: The Essentials: The Diagnosis and Treatment of Hypopituitarism

Presented By

John D. Carmichael, MD
Associate Professor of Clinical Medicine
Co-Director, USC Pituitary Center

After registering you will receive a confirmation email with details about joining the webinar.

Contact us at webinar@pituitary.org with any questions or suggestions.
Date: Thursday, June 30, 2016
Time: 11:00 AM Pacific Daylight Time, 2:00 PM Eastern Daylight Time

Webinar Description

This will be a case-based review of the causes, diagnosis and treatment of pituitary failure, focusing on the most common scenarios patients may encounter. We will review issues with hormonal testing unique to patients with pituitary disease, and the approach toward optimizing pituitary hormone replacement.

Presenter Bio

John CarmichaelDr. John Carmichael is the Co-Director of the USC Pituitary Center and Associate Professor of Clinical Medicine at the Keck School of Medicine at the University of Southern California. After earning a degree in biomedical ethics at Brown University, Dr. Carmichael graduated from the Medical College of Virginia in Richmond. He then completed internship and residency at Virginia Mason Medical Center in Seattle, Washington. He received his endocrinology fellowship training at NYU, where he received a research fellowship grant to conduct clinical trials devoted to growth hormone deficiency and acromegaly after his clinical fellowship. In 2006, he moved to Los Angeles to join the Pituitary Center at Cedars-Sinai Medical Center, where he cared for patients with pituitary disease, devised and conducted clinical trials, and taught medical students, residents, and endocrinology fellows. In 2014, he joined the faculty at the University of Southern California. He has authored several journal articles devoted to clinical pituitary medicine, book chapters covering hypopituitarism and hypothalamic disease, and sits on the editorial boards for Pituitary and Endocrine, Diabetes, and Metabolism Case Reports.

Safety Plan

Reblogged from Kelly’s great blog:

My local endocrinologist wanted me to get a medical bracelet, solucortef, and training. I went back this past Friday and was asked about my plan. Part of the problem is that I live alone. My dogs, cats, and fish can not help me if anything happens. While I check in with family daily for this reason and have friends of the family that have helped, this is not enough. One of the things discussed was making sure that people I have contact with every day know who to contact if I don’t show up for something. Additionally, I was asked to have a neighbor trained in solucortef injection. I thought that the biggest problem I would have would be a problem with needles, BOY WAS I WRONG.

Read more at https://zebraontheside.wordpress.com/2016/06/06/safety-plan/

Webinar: Endoscopic Endonasal Surgery for the Treatment of Cushing’s Disease

Mon, Jun 13, 2016 11:00 AM – 12:00 PM EDT


Presented by:
Dr. Maria Koutourousiou

Webinar DescriptionAn update on the diagnosis and treatment options of Cushing’s disease. Description of the endoscopic endonasal approach for the management of CD. Surgical videos demonstration and comparison with the microscopic transsphenoidal approach. Surgical outcomes and adjuvant treatment.

Presenter Bio

Dr. Mary Koutourousiou is an attending Neurosurgeon and Assistant Professor at the University of Louisville. She is the Director of the Pituitary and Skull Base Program. Dr. Koutourousiou received her M.D. from the Aristotle University of Thessaloniki, Greece and completed her neurosurgical residency at the General Hospital of Athens “G. Gennimatas”, in Greece. She underwent subspecialty fellowship training in Endoscopic Pituitary Surgery and Minimally Invasive Neurosurgery at the UMC St. Radboud, Nijmegen, in the Netherlands. She moved to the United States in 2010 and completed four years of research and a clinical fellowship in Endoscopic and Open Skull Base Surgery at UPMC Presbyterian in Pittsburgh, Pennsylvania.

Dr. Koutourousiou has published extensively in the field of endoscopic skull base surgery. Her studies have been presented in national and international neurosurgical meetings. Dr. Koutourousiou’s work in skull base surgery has been recognized by the European Skull Base Society and the World Federation of Skull Base Societies.

8th Annual Johns Hopkins Pituitary Patient Day

Johns Hopkins Pituitary Patient Day

Join us on Saturday, September 17, 2016

8th Annual Johns Hopkins Pituitary Patient Day
Saturday, September 17, 2016, 9:30 a.m.
Location:
Johns Hopkins Mt. Washington Conference Center
5801 Smith Avenue
Baltimore, MD 21209
map and directions

This is a free event, but seating is limited. Reserve your space now: Please R.S.V.P. by September 9, 2016 by email (preferred) to PituitaryDay@jhmi.edu  or by calling Alison Dimick at 410-955-3921.

Agenda

9:30 – 9:55 a.m.: Registration

9:55 – 10:00 a.m.: Welcome and Acknowledgements

10:00 – 10:25 a.m.: Different Kinds of Tumors in the Pituitary Area: Non-Functioning, Acromegaly, Cushing, etc. (Roberto Salvatori, M.D.)

10:25 – 10:50 a.m.: The Pituitary Gland, Cortisol and Stress (Gary Wand, M.D.)

10:50 – 11:10 a.m.: A Patient’s Story

11:10 – 11:30 a.m.: The Eye and the Pituitary Gland: Why It’s Important to SEE the Right Doctor (Pun Intended) (Dan Gold, D.O.)

11:30 – 11:50 a.m.: Surgery for Pituitary Tumors: (Not So Scary) Pictures from the Operating Room Treating Acromegaly, Cushing and Non-Functioning Tumors (Gary Gallia, M.D., Ph.D.)

11:50 a.m. – 12:10 p.m.: Coordinating the Care of Pituitary Patients: It Takes a Village (Pituitary Nurse)

12:10 – 12:30 p.m.: Radiation Therapy for Cushing, Acromegaly and Non-Functioning Tumors: A Good Option when Needed (Lawrence Kleinberg, M.D.)

12:30 – 1:25 p.m.: Lunch

1:30 – 3:00 p.m. Round Table Discussions:

  • Medical: Making Sense of So Many Medications
  • Surgical: Meet Surgeons and Patients Who Have Had Pituitary Surgery
  • Radiation: Share Your eX-peRience!