Year: 2020

❣️ We Are Nearly 20!

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It’s unbelievable but the idea for Cushing’s Help and Support arrived 20 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 still active and we have 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”

 

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📞 Webinar: Growth Hormone Deficiency, PCOS or Cushing’s: How do You Tell Them Apart?

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Dr. Theodore Friedman (The Wiz) will host a webinar on Growth Hormone Deficiency, PCOS or Cushing’s: How do You Tell Them Apart?

Dr. Friedman will discuss topics including:

  • Signs and Symptoms of Cushing’s Syndrome
  • Testing for Cushing’s
  • Signs and Symptoms of Growth Hormone Deficiency
  • Testing for Growth Hormone Deficiency
  • Signs and Symptoms of PCOS
  • Testing for PCOS
  • How do you tell them apart?

Sunday • August 2 • 6 PM PDT
Click here on start your meeting or
https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=m4eda0c468071bd2daf33e6189aca3489
OR
Join by phone: (855) 797-9485

Meeting Number (Access Code): 133 727 0164 Your phone/computer will be muted on entry.
Slides will be available on the day of the talk here
There will be plenty of time for questions using the chat button. Meeting Password: pcos
For more information, email us at mail@goodhormonehealth.com

👥 Memorial Sloan Kettering 2020 Update on the Treatment of Pituitary Tumors

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This event has been postponed to Dec. 5, 2020

You are Cordially Invited!

The PNA is pleased to announce our participation in this event!

Saturday, December 5, 2020
8:30am – 4:30pm
Zuckerman Research Center
417 E. 68th St. New York, NY
Memorial Sloan Kettering Cancer Center

Target Audience

This course is intended for endocrinologists, neurosurgeons, otolaryngologists, radiation oncologists, neurologists, ophthalmologists, neuro-oncologists, family medicine and internal medicine physicians, physicians in training and other allied health professionals who treat and manage patients with pituitary diseases. We also invite patients with pituitary disease and their caregivers to attend this educational activity and participate in our interactive afternoon breakout sessions. 

Overall this course aims to improve patient care and outcomes through evidence-based discussion of clinical practice guidelines and emerging therapies. Our goal is to assess and update current practices to promote earlier diagnosis and treatment of pituitary diseases. The multidisciplinary nature of the course will allow for the dissemination of knowledge across the variety of practitioners caring for pituitary patients, and for the patients themselves.

Pituitary patients will be able to review treatment options, learn about ongoing clinical trials, and discuss their comprehensive care with providers and other patients. The educational objective of this patient session is to provide a forum for pituitary patients to discuss treatment options and new therapies with providers and other patients.

Patients with pituitary disease and their caregivers are invited to attend this educational activity FREE of charge. If you are a patient or caregiver interested in attending, please email cme@mskcc.org to register (registration is required in order to attend).

Medical Professionals who wish to attend must register online:
mskcc.org/PituitaryCourse

pdfView Course Flyer

📞 / 👥 2020 Barrow Pituitary Center Patient Education Day October 24, 2020

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The Barrow Pituitary Center is dedicated to educating patients, caregivers, and loved ones by providing information which is current and non-biased. Experts at this conference will address management of the emotional and physical elements of living with pituitary disorders. We hope attendees will leave empowered to make better-informed decisions about their healthcare and achieve their goals for a long and fruitful life.

In Person and Online Registration Options

This conference will be offered in person and through live online format with Zoom. We reserve the right to transition to a solely live online format as a result of health concerns as we move into the fall. Participants will be notified if this change develops.

Register here

📞 Webinar: The Current “State-of-the-Art” in the Treatment of Pituitary Disease.

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Presented by

Georgios A. Zenonos, MDAssistant Professor of Neurological Surgery
Associate Director, Center for Skull Base Surgery
University of Pittsburgh Medical Center200 Lothrop Street, Pittsburgh PA, 15217
Presbyterian Hospital, Suite B400

No Registration is Required.  It will be webcast by Microsoft Teams.

Click here to attend.

Date: Friday, July 17, 2020

Time: 10:00 AM Pacific Daylight Time, 1:00 PM Eastern Daylight Time

📞 Webinar: What every Patient needs to know about Recent Advancements in Pituitary Surgery

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Presented by Georgios A. Zenonos, MD

Assistant Professor of Neurological Surgery
Associate Director, Center for Skull Base Surgery
University of Pittsburgh Medical Center

200 Lothrop Street, Pittsburgh PA, 15217
Presbyterian Hospital, Suite B400

Register Now!

After registering you will receive a confirmation email containing information about joining the Webinar.

Date: Wednesday, July 1, 2020

Time: 3:00 PM Pacific Daylight Time, 6:00 PM Eastern Daylight Time

📞 Webinar: Pituitary Surgery During the COVID-19 Pandemic

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Presented by

Jamie J. Van Gompel, M.D., B.S., Professor in Neurosurgery and Otolaryngology specializing in endoscopic/open skull base focusing on Pituitary tumors as well as Epilepsy at the Mayo Clinic in Rochester, Minnesota, USAand

Garret W. Choby, M.D., a fellowship-trained rhinologist and endoscopic skull base surgeon practicing at the Mayo Clinic.

Objectives:

–          Understand the additional considerations that are key to performing endonasal surgery during the COVID pandemic
–          Identify the practice changes that are allowing pituitary surgery to proceed safely
–          Characterize the nasal cavity and nasopharynx as a reservoir for the coronavirus
–          Identify the risk of undergoing pituitary surgery during the Covid -19 pandemic
After registering you will receive a confirmation email containing information about joining the Webinar.Date: Monday, May 11, 2020

Time: 4:00 PM Pacific Daylight Time  – 5:15 PM Pacific Daylight Time

📞 Webinar: The Implications of COVID-19 on Patients with Endocrine Disorders

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Presented by

Nelson M. Oyesiku, MD, PhD, FACS
Professor of Neurosurgery and Medicine
Vice-Chairman, Neurosurgery Residency Program Director
Emory University School of Medicine

Register Now!

After registering you will receive a confirmation email containing information about joining the Webinar.

 

Date: Sunday, May 10, 2020

Time: 11:00 AM Pacific Daylight Time to 12:15 PM Pacific Daylight Time/ 2:00 PM – 3:15 PM Eastern Daylight Time

📞 Dr. Theodore Friedman (The Wiz) will host a webinar on “How to improve quality of life for those with no adrenals (BLA and Addison’s)”

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Dr. Friedman will discuss topics including:

  1. Who should get an adrenalectomy?
  2. How do you optimally replace adrenal hormones?
  3. What laboratory tests are needed to monitor replacement?
  4. When and how do you stress dose?
  5. What about subcut cortisol versus cortisol pumps?
  6. Patient Melissa will lead a Q and A

Sunday • May 17 • 6 PM PST
Click here on start your meeting or
https://axisconciergemeetings.webex.com/axisconciergemeetings/j.php?MTID=mb896b9ec88bc4e1163cf4194c55b248f

OR
Join by phone: (855) 797-9485

Meeting Number (Access Code): 802 841 537 Your phone/computer will be muted on entry.
Slides will be available on the day of the talk here
There will be plenty of time for questions using the chat button. Meeting Password: addison
For more information, email us at mail@goodhormonehealth.com

🦓 Day 30, Cushing’s Awareness Challenge 2020

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Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…

To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year.  Possibly this will become a tradition.

I am amazed at how well this Challenge went this year, giving that we’re all Cushies who are dealing with so much.   I hope that some folks outside the Cushing’s community read these posts and learned a little more about us and what we go through.

So, tomorrow, I’ll go back to posting the regular Cushing’s stuff on this blog – after all, it does have Cushing’s in its name!

I am trying to get away from always reading, writing, breathing Cushing’s, and trying to celebrate the good things in my life, not just the testing, the surgery, the endless doctors.

If you’re interested, I have other blogs about traveling, friends, fun stuff and trying to live a good life, finally.  Those are listed in the right sidebar of this blog, past the Categories and before the Tags.

Meanwhile…

Time-for-me

Choose wisely…