🏞 Rebuilding the MemberMap

Slowly but surely, we’re rebuilding the Cushing’s Member Map. The location where we hosted it previously started charging huge amounts of money, so it’s being moved here.

Add your information (or your doctor’s) at https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/ or below:

 

 

💉 CLINICAL TRIALS | Awareness Project

Health Condition: All Conditions

Demographics: Ages 18+, United States Resident

Special Request(s): Everyone who has taken part in a clinical trial is asked to share. We are interested in learning why you decided to take part in a clinical trial and how your experience went.

Honoraria: Some respondents may be asked to participate in a clinical trial awareness network where there are paid opportunities to tell their stories.

 Apply to learn more.

📞 Webinar: Expect more from pituitary surgery: difference-makers for post-operative outcomes

 Presented by

Ahmad Sedaghat, MD, PhD – Associate Professor and Director of the Division of Rhinology, Allergy and Anterior Skull Base Surgery in the Department of Otolaryngology – Head and Neck Surgery at the University of Cincinnati College of Medicine and UC Health.

Norberto Andaluz, MD, MBA, FACS – Professor of Neurosurgery and Otolaryngology/Head and Neck Surgery – Director, Division of Skull Base Surgery University of Cincinnati College of Medicine and University of Cincinnati Gardner Neuroscience Institute – UC Health

 

Click here to attend

Date: Wednesday, Sept 23, 2020

Time: 3:00 PM  Eastern Daylight Time

Learning objectives:

1.  To understand the surgical steps of endoscopic pituitary surgery
2.  To understand how the surgical steps of endoscopic pituitary surgery translate to post-operative outcomes
3.  To understand surgical factors that can modify post-operative outcomes after endoscopic pituitary surgery
4.  To understand post-operative care that can modify post-operative outcomes after endoscopic pituitary surgery

📰 WP Thyroid and Nature-Throid recall-August 2020

Dr. Friedman prescribes various thyroid hormone preparations to his patients with hypothyroidism. This includes natural desiccated thyroid (NDT) of which two preparations are WP Thyroid and Nature-Throid, both made by RLC Labs. On August 25, 2020, RLC Labs announced a voluntary, consumer-level recall of all lots of Nature-Throid and WP Thyroid tablets because somel ots contain less than the required 90% of the active ingredient as determined by the FDA. The RLC spokesperson said to Dr. Friedman that one lot of WP Thyroid and 5 lots of Nature-Throid contained between 87% and 90% of the labeled amount of levothyroxine (T4) or liothyronine (T3). The recall did not disclose which of the lots were affected and all lots are recalled, not just the affected lots. According to the recall, if a patient receives a sub-potent tablet, hypothyroid symptoms may not be controlled. To date, there have been no reports of adverse events related to this recall. Patients who have had an adverse event should contact RLC Labs.

RLC Labs advised that patients should talk to their healthcare professional before they stop taking their Nature-Throid and WP Thyroid medicine. Consumers with questions about the recall can email RLC at recall@rlclabs.com or RLC Customer Service  (877) 797-7997. Patients may return unexpired Nature-Throid and WP Thyroid tablets to their pharmacy who are legally required to refund the cost of the tablets. Currently no lots of Nature-Throid and WP Thyroid tablets are commercially available, so a replacement with the same product is not an option. It is unknown how long it will be before Nature-Throid and WP Thyroid become commercially available.

Dr. Friedman has several comments about this recall. This is the second recall of desiccated thyroid as some lots of NP thyroid were recalled in May 2020. Dr. Friedman sees this as unfortunate, but still believes desiccated thyroid is a good option for patients with hypothyroidism. Secondly, the “subpotent” Nature-Throid and WP Thyroid pills are only slightly less potent than stated in that only a few lots are between 87% and 90% of the T4 and T3 levels. For most patients, they will not have symptoms from these subpotent pills and if they are taking a lot that is subpotent, the dose can be adjusted based on laboratory levels at your next appointment with Dr. Friedman.

According to Dr. Friedman, patients taking Nature-Throid and WP Thyroid have three options: 1) they can continue taking Nature-Throid and WP Thyroid knowing they may have a subpotent lot and knowing that they may not be able to get a refill at least temporarily. 2) patients can be switched to Armour thyroid, NP thyroid or have a compounding pharmacy compound the equivalent dose using USP grade porcine powder. Please let Dr. Friedman’s office know if you would like to go on a different desiccated thyroid product (and which one) and what pharmacy you would like to use, 3) Dr. Friedman has a small supply of desiccated thyroid that is available at his clinic for those in Los Angeles on the last Tuesday night of each month. He will not be able to mail desiccated thyroid. Please contact his office about this option.

Patients do not need to contact Dr. Friedman, but if you have any questions or need to schedule an appointment with Dr. Friedman, please email us at mail@goodhormonehealth.com or schedule an appointment on his website at goodhormonehealth.com.

💲 Cushing Syndrome interview (NEON_4470), 60-minutes, One Hundred Dollar reward

 

Thanks for being a member of Rare Patient Voice, LLC. We have an opportunity for you to take part in a Cushing Syndrome interview (NEON_4470) for Patients. Our project number for this study is NEON_4470.

Project Details:

  • Telephone interview
  • Interview is 60-minutes long
  • One Hundred Dollar Reward
  • Looking for Patients diagnosed with Endogenous Cushing Syndrome 

Things to Note:

  • Patient study only, Caregivers please pass the link along
  • Unique links, please do not pass along for 2nd use
  • Want to share this opportunity? Let us know and we can provide a new link
  • Please use a laptop/computer ONLY. No smartphones or tablets – Preliminary questions are Mobile Friendly!
  • Save this email to reference if you have any questions about the study!
  • If you have any problems, email michael.taylor@rarepatientvoice.com and reference the project number.  If you hit reply, you will get an auto do-not-reply email.

If you are interested in this study, please click the link below to answer a few questions to see if you qualify.

Study Link: Link

Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission.

Not Interested in this study? (Click link below so we do not send you any reminders for this study)

Study Reminder Opt Out Link: Link

We truly appreciate the time you set aside to interact with our company and don’t take it for granted. Receive a $5 gift card for referring others who may want to participate in this or future studies. Invite them to join Rare Patient Voice: https://www.rarepatientvoice.com/sign-up. They, too, receive a gift card.

Our Privacy Policy

Regards,

Michael Taylor
Project Manager
Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions
Phone: + 1 609-462-5519
Email: michael.taylor@rarepatientvoice.com
Websites: www.rarepatientvoice.com
Rare Patient Voice

❣️ Happy 20th Birthday Cushing’s Help!

It’s unbelievable but the idea for Cushing’s Help and Support arrived 20 years ago late last night. 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.

Thanks to a now-defunct Microsoft program called FrontPage, the first one-page “website” (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000.

All our Cushing’s-related sites:

 

❣️ We Are Nearly 20!

happybirthday-2015

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”

 

maryo colorful zebra

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

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

 

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

 

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.

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