Interviews, Meetings and Conferences

🎤 Archived Interview with Judy, Mom to Two Cushing’s Patients, and her Daughter, Jess

MaryO Cushing's Awareness Challenge, Interviews, Meetings and Conferences , , , ,

 

Interview with Judy, the mother of two Cushing’s patients, and her daughter, Jess, a high school student with Cushing’s. Robin (staticnrg) hosted.

Sadly, Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness.  She was a great warrior for her children.  Here’s her bio: https://cushingsbios.com/2019/12/15/in-memory-judy-kennedy-december-15-2019/

 

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/17/judy-mom-to-2-cushings-patients-and-her-daughter-jess

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🎤 Archived Interview: JenS discussed Bilateral Adrenalectomy (BLA)

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Jen had Pituitary surgery by Dr. Shahinian 4/28/04, removed ACTH secreting corticotroph hyperplasia and prolactinoma.

She was diagnosed by Dr. Theodore Friedman as cyclical pituitary Cushings.

Her second Surgery 7/21/04 for infection resulted in neuralgia. She had a BLA in March 2006 as Corticol Hyperplasia returned and she now has possible Nelson’s syndrome. Jen also has Thyroid Issues (Hashimoto’s, multiple nodules and entire thyroid removed 2003) and she is Growth Hormone Deficient (3/2006)

Listen at http://www.blogtalkradio.com/cushingshelp/2008/02/29/jens-discusses-bilateral-adrenalectomy-bla

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🎤 Archived Cushing’s Awareness Day Voice Chat!

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Listen as Jayne Kerns and Robin Smith (staticnrg) hosted a Cushing’s Awareness Day Special Chat a few years ago.

This chat had callers and some testimonials for the website and Mary O’Connor (MaryO). Ideas were discussed for setting up non-profit status for this website.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/09/special-cushings-awareness-day-voice-chat

 

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🎤 Archived Interview: Symptoms and Diagnosis: Cushing’s Message Board Members

MaryO Cushing's Awareness Challenge, Cushing's Awareness Challenge, Interviews, Meetings and Conferences , , , , ,

As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.

The series is still going on, so if you’d like to be a part of this, just let me know.  You can fill out this form and check off that you want to do an interview – Add Your Bio

There are currently 89 interviews in our series.  This is the second one:

Robin Smith (staticnrg) hosted as Cushing’s message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing’s is and what the symptoms are.

Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/10/cushings-members

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Webinar on Dr. Friedman’s views on the Pituitary Society “Consensus” Guidelines on Cushing’s disease and new Cushing’s medicines

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Although Dr. Friedman is at the forefront of Cushing’s Disease, he was not invited to be part of the Pituitary Society Consensus Guidelines on Cushing’s Disease published in Lancet Diabetes and Endocrinology in 2021, many of his ideas on Cushing’s Disease that he has been advocating for years were included in the recent guidelines. In this informative webinar, Dr. Friedman will discuss

  1. The use of imaging for the diagnosis of Cushing’s Disease
  2. The need for multiple testing to diagnose episodic Cushing’s Disease
  3. The importance of UFC and salivary cortisol testing
  4. The use of medication trial prior to surgery
  5. The use of ketoconazole for the medication trial and longer-term treatment
  6. Dr. Friedman will also discuss new Cushing’s medications.
Sunday • April 3 • 6 PM PST

Via Zoom Click here to join the meeting or
https://us02web.zoom.us/j/4209687343?pwd=amw4UzJLRDhBRXk1cS9ITU02V1pEQT09
OR
+16699006833,,4209687343#,,,,*111116#
Slides will be available on the day of the talk here. You can also click to read the consensus guidelines
There will be plenty of time for questions using the chat button.

For more information, email us at mail@goodhormonehealth.com

Record a Video, Receive A Rarity T-Shirt!

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@happygirl – this looks perfect for you with all your videos!  If you or anyone else from the boards does this, please let me know :)

Help Rare Patient Voice spread the word to other patients and caregivers about RPV by submitting a short video on your experience with us. Check out the growing group of patients and caregivers who have recorded stories: https://rarepatientvoice.com#sharevoice. As a thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card.

Follow these steps to record and submit your own video!

 

Step 1: Scan with code below with the camera app from your Apple/Android mobile device or click the link below!

https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice

 

Step 2: Download the Storyvine app from the App Store or Google Play

Step 3: Film and upload your video!

To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card. Congratulations to Natalie of California, our January 3 raffle winner! Our next raffle will be held in early February.

“A Window into Rare” a Rare Disease Day Panel Discussion

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Join our Rare Disease Day virtual panel discussion as BioNews columnists from a variety of our rare communities participate in a lively conversation with fellow patient advocate Liza Bernstein. This window into often overlooked aspects of life with a rare disease will provide a variety of patient perspectives. Topics will include awareness and advocacy, equity, mental health, empowerment, and more. We invite everyone to join us for this signature event and look forward to your participation in the Q and A!

Panelists:

Paris Dancy, Columnist, Cushing’s Disease News
Michelle Gonzaba, Columnist, Myasthenia Gravis News
Claire Richmond, Columnist, Porphyria News
Sherry Toh, Columnist, SMA News Today

Hosted by Liza Bernstein, Patient Advocate & Sr. Director Patient & Community Engagement

Feb 28, 2022 02:00 PM in Central Time (US and Canada)

Register at https://us06web.zoom.us/webinar/register/WN_dylme0wBRCyH8TfQ7B6x-w

Join us for a Virtual RDLA Regional Meet and Greet Session!

MaryO Interviews, Meetings and Conferences ,

Meet Rare Disease Advocates from your state and region, get to know our YARR members, and win prizes!

Each session is arranged based on where you live and hosted by RDLA in partnership with the Young Adult Representatives of RDLA (YARR) and State Organization Leaders.

This is a fun opportunity for the rare disease community in each region and state to get together before Rare Disease Week to foster community and camaraderie. Whether you are new or a veteran of the rare disease community, there will be something for everyone. We want to take time to get together socially before the excitement of Rare Disease Week! See below for details on the virtual session in YOUR region.

Please note that you will be prompted to select which Meet and Greet session below you would like to attend once you reach the checkout page. One session per attendee. Please choose the session with the state from where you are located. Please note the time zone!

Virtual Regional Meet and Greet Sessions:

January 11 at 5-6 pm PST: AK, AZ, CA, CO, HI, ID, MT, NV, NM, OR, UT, WA, WY, U.S. Territories

January 11 at 6-7 pm CST: AR, IL, IN, IA, KS, MI, MN, MO, NE, ND, OK, SD, WI

January 13 at 6-7 pm CST: AL, FL, GA, KY, LA, MS, OH, SC, TN, TX, WV

January 13 at 6-7 pm EST: CT, DC, DE, ME, MD, MA, NH, NJ, NY, NC, PA, RI, VT, VA

No prior experience necessary. Registration for this event and all RDLA events are free for rare disease advocates.

RAFFLE DETAILS: To be entered to win the raffle, registration AND attendance to one Regional Meet and Greet 2022 session is required. Only one winner per session. No repeat winners for attending multiple sessions.

This is NOT registration for Rare Disease Week. If you have not registered for Rare Disease Week and would like to please click here.

For more information or for any questions, please contact Rachelle Raudes, RDLA State Advocacy Fellow at rraudes@everylifefoundation.org or visit our State Advocacy Hub.
Register Here for a Virtual Meet and Greet Session
You can find the schedule of events for Virtual Rare Disease Week below.

Virtual Rare Disease Week on Capitol Hill 2022 Schedule of Events

Tuesday, February 22

1:00-2:00 pm ET: Rare Disease Congressional Caucus Briefing

5:30 -7:30 pm ET: Rare Disease Documentary Screening

Wednesday, February 23

1:00-5:00 pm ET: Legislative Conference Day 1

5:00 pm ET: Virtual Rare Artist Gallery Opens

Thursday, February 24

1:00-5:00 pm ET: Legislative Conference Day 2

5:15-6:00 pm ET: YARR Meetup

Friday, February 25

12:00-1:00 pm ET: Office Hours

Monday, February 28

Rare Disease Day at NIH

Tuesday, March 1

Meetings with House of Representatives

Wednesday, March 2

Meeting with Senators

Record a Video and Receive Rarity the Zebra!

MaryO Interviews, Meetings and Conferences ,

Please help us spread the word to other patients and caregivers about Rare Patient Voice by submitting a short video about your experience with us. Using the Storyvine app, recording a video on your phone is quick, easy, and fun! Videos will be featured on our website, on social media, and in newsletters.

Check out and join the growing group of RPV patients and caregivers who have recorded stories! https://rarepatientvoice.com#sharevoice

Follow these steps to record and submit your own video!

Step 1: Scan with code below with the camera app from your Apple/Android mobile device or click the link below!

https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice

Step 2: Download the Storyvine app from the App Store or Google Play

Step 3: Film and upload your video!

To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card. Congratulations to Stacy of South Carolina, our December 1 raffle winner! Our next raffle will be held in early January.

📞Webinar on The 20-minute Mini Back Scope Adrenalectomy (MBSA)

MaryO Helpful Doctors, Interviews, Meetings and Conferences , , , , , , ,

 

Dr. Friedman will host Tobias Carling, MD, PhD, FACS
Surgeon-in-Chief & Founder
Carling Adrenal Center
Hospital for Endocrine Surgery
www.adrenal.com
Who will talk on:
The 20-minute Mini Back Scope Adrenalectomy (MBSA)

The Carling Adrenal Center is the world’s busiest adrenal surgery center, operating on patients from all 50 states and all over the world.

Dr. Carling is the most experienced adrenal surgeon in the United States, and by far the world’s most knowledgeable surgeon-scientist when it comes to adrenal gland function and disease, adrenal tumors and cancer, and all forms of adrenal gland surgery. Dr. Carling has more experience with advanced minimally invasive adrenal and endocrine operations than any surgeon in the United States. A fellow of the American College of Surgeons, Dr. Carling is a significant member of both the American Association of Endocrine Surgeons (AAES) and the International Association of Endocrine Surgeons (IAES).

Dr. Carling spent 17.5 years at Yale University and the Yale University School of Medicine where he served as the Chief of Endocrine Surgery, Associate Professor of Surgery, Program Director of the Yale Endocrine Surgery Fellowship and the Founder & Director of the Yale Endocrine Neoplasia Laboratory, a supreme scientific program focused on the molecular pathogenesis of tumors arising in the adrenal, thyroid and parathyroid glands.

Dr. Carling moved his world-renowned adrenal surgery program to Tampa, Florida in early 2020 to start the Carling Adrenal Center. Here, patients needing adrenal surgery have access to the best practices and best techniques the world has to offer.

Dr. Carling works closely with Dr. Friedman and will be able to perform a Mini Back Scope Adrenalectomy with a referral from Dr. Friedman.
Sunday • November 7• 6 PM PST

Via Zoom Click here to join the meeting or
https://us02web.zoom.us/j/4209687343?pwd=amw4UzJLRDhBRXk1cS9ITU02V1pEQT09
OR
+16699006833,,4209687343#,,,,*111116#
Slides will be available before the webinar and recording after the meeting at slides

Your phone/computer will be muted on entry. There will be plenty of time for questions using the chat button.
For more information, email us at mail@goodhormonehealth.com