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    Friday April 12, 2019 8:30am – 4:30pm Zuckerman Research Center 417 E. 68th St. New York, NY Memorial Sloan Kettering Cancer Center This course is suited for medical professionals, patients, and caregivers to improve patient care and outcomes through evidence-based discussion of clinical practice guidelines and emerging therapies in order to assess and update current practices to promote earlier diagnosis and treatment of pituitary diseases. The multidisciplinary nature of the course will allow the dissemination of knowledge across the variety of practitioners caring for pituitary patients, as well as for patients and caregivers. After completion of this educational activity, participants will be up-to-date on the latest in ongoing care and clinical management of patients with pituitary conditions. The patient breakout sessions will provide pituitary patients the ability to review treatment options, learn about ongoing clinical trials, and discuss their comprehensive care with providers and other patients. Memorial Sloan Kettering Cancer Center is providing this course to pituitary patients and caregivers free of charge. To register to attend, please email cme@mskcc.org . (Please note: Registration is required in order to attend.) Medical Professionals who wish to attend must register online: mskcc.org/PituitaryCourse . View Course Flyer
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    13th Annual Conference for Adults with Endocrine Disorders in Partnership with Barrow Neurological Institute Pituitary Center February 28th, 2019 - March 3rd, 2019 Phoenix, Arizona Schedule of Events Thursday 5:00 pm - 7:00 pm Welcome Reception, Wyndham Garden Phoenix Midtown Friday 9:00 am - 4:00 pm Exhibitors, Barrow Pituitary Center 10:00 am - 12:00 pm Educational Segments, Barrow Pituitary Center 12:00 am - 1:00 pm Lunch (included) 1:00 pm - 3:00 pm Educational Segments, Barrow Pituitary Center 5:00 pm - 8:00 pm Group outing to Scottsdale Waterfront Saturday 10:00 am - 12:00 pm Educational Segments, Barrow Pituitary Center 12:00 am - 1:00 pm Lunch (included) 1:00 pm - 3:30 pm Educational Segments, Barrow Pituitary Center Sunday 9:00 am - 1:30 pm Educational Segments, Wyndham Garden Phoenix Midtown ********************************************************** Friday Educational Segments at Barrow Pituitary Center 10:00 am Managing Cushings: Navigating Through the Maze, Yuen or 10:00 am Managing AGHD: Daily and Beyond, Knecht 11:00 am Hypothalamic Obesity: Not Just Calories In, Calories Out, Connor 12:00 pm LUNCH (included) 1:00 pm Me, Myself and My Adrenal Insufficiency, Yuen 2:00 pm Navigating the Medical Maze, Herring Saturday Educational Segments at Barrow Pituitary Center 10:00 am Beyond AGHD and Cushings: Familial and Genetic Factors, Stratakis 11:00 am Q&A, Stratakis 12:00 pm LUNCH (included) 1:00 pm Tools for Coping with my Endocrine Disorder, Jonas 2:00 pm Finnigan and Friends: A Year in AI Training, Palmer 2:30 pm Quality of Life Study, Cushings, Edgar & Keil or 2:30 pm Life is What You Make Of It, Jones Sunday Educational Segments at Wyndham Garden Phoenix Midtown 9:00 am Preventing Muscle Wasting and Nutrition, Fine 10:00 am Nuances of Treating Hypothyroidism, Friedman 11:00 am Macrilen Stimulation Test for Growth Hormone Deficiency, Friedman 11:45 am The New and The Old for Diagnosing Cushing's Syndrome, Friedman 12:30 pm Ask the Wiz, Friedman Location Barrow Neurological Institute at St. Joseph's Hospital and Medical Center Goldman Auditorium and Sonntag Pavilion 350 W. Thomas Rd. Phoenix, AZ 85013 Transportation will be provided on Friday and Saturday between the Wyndham Hotel to Barrow for an hour prior to the segments and an hour after close of the segments. The hotel is approximately 1/2 mile away from Barrow Pituitary Center if you choose to walk or travel there on your own. Hotel Room Rates and Reservations Wyndham Garden Phoenix Midtown 3600 N. 2nd Ave. Phoenix, AZ 85013 $109 per night + tax. Includes free wifi, parking and buffet breakfast To make hotel reservations call 602-604-4900 and ask for The MAGIC Foundation guest room block. Refrigerators are first come so be sure to request one when making your reservation. Airport Transportation Transportation is not provided to/from the hotel from the airport. The Wyndham is approximately 9 miles from the airport. Preferred airport is Phoenix, AZ - PHX - Sky Harbor Intl. Deadline to Register and book your hotel is January 28, 2019 View the entire PDF Program
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    For those who can not make it to Washington, DC next week, we're pleased to announce a livestream will be available for the Rare Disease Congressional Caucus briefing. Rare Disease Legislative Advocates with honorary co-hosts Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN), Co-Chairs of the Rare Disease Congressional Caucus, invite you to a lunch briefing: The Diagnostic Odyssey Tuesday, December 4, 2018, from 12:00 p.m. until 1:00 p.m. 121 Cannon House Office Building Complimentary lunch included Registration available on-site Register for the event livestream by clicking this link. If you have questions about the briefing, please email Shannon von Felden, RDLA Program Manager, at svonfelden@everylifefoundation.org.
  5. 1 point
    Absolutely! I had to do weeks and weeks of UFCs before I was finally diagnosed. Best of luck to you, Kenz. I hope you join the boards so you can get access to all the info and here.
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    Hi Sharon, I had all of that except for the nausea. The itching I had mostly at night and it woke me up. The flushing red face and chest and arms were the colour of lobster and then my face was the colour of red wine.
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    MEKT1 Could Be a Potential New Therapy for Treating Cushing’s Disease PPAR-γ agonists — agents that activate PPAR-γ — include the medications rosiglitazone and pioglitazone, both of which are used to treat type 2 diabetes. Some studies have shown that rosiglitazone and pioglitazone have an effect on Pomc suppression, which would lead to lower levels of ACTH and help treat patients with Cushing’s disease. However, the benefits of PPAR-γ agonists in the treatment of Cushing’s disease are still controversial. Read more at https://cushieblog.com/2018/08/02/mekt1-could-be-a-potential-new-therapy-for-treating-cushings-disease/
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    Transsphenoidal Surgery Is Safe and Effective Treatment for Cushing’s Disease Surgical removal of tumors in the pituitary gland of the brain remains the gold standard for Cushing’s disease treatment. Transsphenoidal surgery (TSS) usually leads to good remission rates ranging from 68-95%, depending on the location and type of tumor, the neurosurgeon’s expertise, follow-up period, and the definition of remission. Today, TSS consists of surgery directed through the nose to get to the bottom of the skull, where the pituitary gland is located. The tumor is reached via the nasal cavity with no need for incisions on the face. https://cushieblog.com/2018/07/28/transsphenoidal-surgery-is-safe-and-effective-treatment-for-cushings-disease/
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    New Testimonial From Melanie C I remember my first guest post in 2007, was overjoyed to find I wasn't the only medical anomaly lol! Congratulations to Cushing's Help for coming of age! ? Posted at https://cushieblogger.com/testimonial/melanie-c/
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    New Testimonial From Christina P I found it [Cushing's Help] 11 years ago quite by accident and it not only changed my life but saved my life! Thank you, Mary Kelly O'Connor! Read more at https://cushieblogger.com/testimonial/christina-p-5/
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    Presented by Eliza Geer, MD Medical director, Multidisciplinary Pituitary & Skull Base Tumor Center Associate Attending, Endocrine Service Memorial Sloan Kettering Cancer 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: Wednesday, July 18, 2018 Time: 10:00 AM - 11:00 AM Pacific Daylight Time 1:00 PM - 2:00 PM Eastern Daylight Time Webinar Description: Learning Objectives: Review Cushing’s disease treatment guidelines Evaluate currently available medical therapies for Cushing’s disease Discuss new therapies in clinical trials Presenter Bio: Dr. Geer is an endocrinologist who specializes in caring for people with pituitary and neuroendocrine diseases. She is the Medical Director of Memorial Sloan Kettering’s Multidisciplinary Pituitary & Skull Base Tumor Center, located at Memorial Hospital in Manhattan. Their multidisciplinary pituitary team provides personalized surgical and medical treatment for people with pituitary and skull base tumors, including prolactinomas, growth-hormone secreting adenomas (acromegaly), and Cushing’s disease. Their overall goal is to improve and advance the care of people with these conditions. Dr. Geer’s research interests focus on achieving a better understanding of how and why pituitary tumors develop, and characterizing long-term outcomes in patients with Cushing’s disease. She has conducted a number of studies investigating body composition, adipose tissue regulation, and appetite in patients with Cushing’s disease, and she is involved in clinical trials investigating new medical therapies for patients with Cushing’s and acromegaly. Dr. Geer completed her internship and residency at the NewYork-Presbyterian Hospital/Columbia Medical Center. She was a fellow in endocrinology and metabolism at the Icahn School of Medicine/Mount Sinai Medical Center, after which she was a member of the faculty for ten years. She is currently an associate professor of medicine and an active member of the Endocrine Society, the Pituitary Society, the Pituitary Network Association and the American Association of Clinical Endocrinologists.
  12. 1 point
    Thanks, Gig! I also got this answer from another Cushie:
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    Steve, I might be in the same boat. My vision seems to come and go but I figured it was just me getting older. I'm post-op nearly 30 years.
  14. 1 point
    Read all the blog posts here, on the right side. It would be great to share some (ALL?) on Twitter, Facebook, wherever to get the word out even further.
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    I plan to do the Cushing's Awareness Challenge again. Last year's info is here: https://cushieblogger.com/2017/03/08/time-to-sign-up-for-the-cushings-awareness-challenge-2017/ The original page is getting very slow loading, so I've moved my own posts to this newer blog. As always, anyone who wants to join me can share their blog URL with me and I'll add it to the links on the right side, so whenever a new post comes up, it will show up automatically. If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc. If you have photos, and you give me permission, I'll add them to the Pinterest page for Cushing's Help. The Cushing’s Awareness Challenge is almost upon us again! Do you blog? Want to get started? Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Eighth Annual Cushing’s Awareness Blogging Challenge. All you have to do is blog about something Cushing’s related for the 30 days of April. There will also be a logo for your blog to show you’ve participated. Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Cushing's Help Facebook Groups, on the message boards or an email and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/) The more people who participate, the more the word will get out about Cushing’s. Suggested topics – or add your own! In what ways have Cushing’s made you a better person? What have you learned about the medical community since you have become sick? If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients? What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that. I have Cushing’s Disease….(personal synopsis) How I found out I have Cushing’s What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.) My challenges with Cushing’s Overcoming challenges with Cushing’s (could include any challenges) If I could speak to an endocrinologist organization, I would tell them…. What would I tell others trying to be diagnosed? What would I tell families of those who are sick with Cushing’s? Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured. What will happen if I’m not cured? I write about my health because… 10 Things I Couldn’t Live Without. My Dream Day. What I learned the hard way Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer) Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual! 5 Challenges & 5 Small Victories. The First Time I… Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more. How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially? Why do you think Cushing’s may not be as rare as doctors believe? What is your theory about what causes Cushing’s? How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals? What new goals did Cushing’s bring to you? How do you cope? What do you do to improve your quality of life as you fight Cushing’s? How Cushing’s affects children and their families Your thoughts…?
  16. 1 point
    My doctors say it can take a lot of testing before a diagnosis. Midnight saliva cortisols mostly. Beware...not all labs support this and it may take some effort to get it accomplished.
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    In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about 'getting rid of extra belly fat' by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.Read more at http://www.cushings-info.com/index.php?title=Adrenal_Insufficiency
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    Rare Disease Day Each and every day since 1987, I tell anyone who will listen about Cushing’s... Read more at https://cushieblogger.com/2018/02/28/rare-disease-day/
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    Sign Up and Enjoy Patient Benefits To join our database and to receive a $5 gift card if you qualify, please complete the form below. Currently, we are looking for patients and caregivers with many different rare conditions. Please fill out the sign-up form below and we’ll let you know if you qualify. If you are the caregiver of more than one patient, or are both a patient and caregiver, please fill out a separate entry for each and you will receive multiple gift cards. Please be aware that each entry is checked individually. Please include your correct personal phone number as we will call you to verify your information. It may take up to four weeks before you receive your gift card if you qualify. Read more about how we use your information. At this time we are accepting patients and caregivers across all diseases and conditions. However, that does not guarantee we will have surveys for you. If there are not any companies that have treatments available, or there are no companies developing treatments, then there would be no sponsors for surveys. But we are always looking for sponsors for all disease categories! Only one caregiver per household, please! That is because our survey sponsors won’t allow more than one response from caregivers in the same household. If you have more than one caregiver, you can decide which of you can do each survey. Please be aware that the rewards you earn from participating in market research, like all income you receive, is considered taxable by the IRS. We are required to submit form 1099 for each patient or caregiver whom we pay $600 or more in a year. We are proud to say that we’ve rewarded patients with over $2.1 million for participating in surveys in the past four years! Register here!
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    Usually, you have to do a LOT of 24-hour UFCs to get diagnosed. One just doesn't get it. When I was being diagnosed, I did several weeks of daily UFCS. Are you seeing a good endocrinologist who is knowledgeable about Cushing's? Please keep us posted.
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    I have several symptoms of Cushings: weight gain around middle, puffy face, extreme fatigue/no energy, feel weak going upstairs, buffalo hump, insomnia, numbness in feet, headache... Do not have: Striae, skin that bruises easily, slow healing cuts, acne, more body hair, absent menstrual periods Other Symptoms: Lymph glands in neck burning/throbbing from time to time, still reoccurring knee pain (Lymes?) Recently diagnosed/treated for Lymes disease Creatinine 1833 (Range 700-1800) Positive Thyroid Antibody test (not extremely high though 76 (Range 0-34) TSH 2.5 in April now 1.650 (Range 0.340-4.820) Free T4 0.74 (range 0.59-1.40) Low Vit D. Treated white cell count normal I took the 24 hour Free urine Cortisol test and it was only 2.5 points above the normal range 52.5 (range 4.0-50.0). I have another appt. with Endo but should I just cancel it as she said unless my Thyroid levels were out of range she would not treat me? I feel so horrible...mainly from the extreme weight gain and fatigue. I don't know what I should do next? Could this be Cushings? Hashimotos (but not affecting my thyroid levels yet), still Lymes disease? Appreciate your insight and Medical Expertise
  22. 1 point
    Are there any long term reproductive implications due to use of Korlym?
  23. 1 point
    I lost copious amounts of hair while on Korlym, is this a known side effect?
  24. 1 point
    Thanks so much, Betseebee. We still need questions from folks in advance.
  25. 1 point
    Looking forward to it Mary. Thanks so much for arranging it.
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