🏞 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:

 

 

👥Update on the Treatment of Pituitary Diseases: Emerging Therapies

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 .

pdfView Course Flyer

👥13th Annual Conference for Adults with Endocrine Disorder

 

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

💉 Helpful Doctors: New Jersey

James K. Liu, MD
Professor of Neurosurgery
Director of Skull Base and Pituitary Surgery
Rutgers University, New Jersey Medical School
RWJ Barnabas Health

Dr. James K. Liu is the Director of Cerebrovascular, Skull Base and Pituitary Surgery at the Rutgers Neurological Institute of New Jersey, and Professor of Neurological Surgery at Rutgers University, New Jersey Medical School. He is board certified by the American Board of Neurological Surgery, and has a robust pituitary tumor practice at University Hospital and Saint Barnabas Medical Center.

Dr. Liu graduated summa cum laude from UCLA with Phi Beta Kappa honors, and obtained his MD from New York Medical College with AOA honors. After completing a neurosurgery residency at the University of Utah in Salt Lake City, he was awarded the Dandy Clinical Fellowship by the Congress of Neurological Surgeons, and obtained advanced fellowship training in Skull Base, Cerebrovascular Surgery & Neuro-oncology at the Oregon Health & Science University in Portland.

Dr. Liu is renowned for his comprehensive treatment of complex brain tumors and skull base lesions, including pituitary tumors, acoustic neuromas, meningiomas, craniopharyngiomas, chordomas, and jugular foramen tumors. His robust clinical practice encompasses both traditional open and minimally invasive endoscopic endonasal skull base approaches. He also specializes in microsurgery of cerebrovascular diseases including aneurysms, arteriovenous malformations (AVMs), cavernous malformations, and carotid artery stenosis. He also has expertise in cerebrovascular bypass procedures for moya moya disease, carotid artery occlusion, vertebral artery occlusion, complex aneurysms and skull base tumors, as well as endoscopic-assisted microvascular decompression for trigeminal neuralgia and hemifacial spasm.

As one of the most active researchers in his field, Dr. Liu has published extensively with over 250 peer-reviewed publications and 25 textbook chapters. He has taught many hands-on cadaver dissection courses in skull base surgery and has lectured extensively nationally and internationally throughout North America, Latin America, Europe, and Asia. Dr. Liu’s research is focused on the development of innovative and novel skull base and endoscopic techniques, quantitative surgical neuroanatomy, microsurgical and microvascular anastomosis skills training, virtual surgical simulation, pituitary tumor biology, and clinical outcomes after skull base and cerebrovascular surgery.

Dr. Liu is an active member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons, North American Skull Base Society, Pituitary Network Association, The Facial Pain (Trigeminal Neuralgia) Association, AANS/CNS Cerebrovascular Section, Tumor Section. He serves on the medical advisory board of the Acoustic Neuroma Association of New Jersey, and is the current Secretary-Treasurer of the International Meningioma Society.

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📞 Webinar: Treatment Strategies for Prolactinomas

Presented by:

James K. Liu, MD
Professor of Neurosurgery
Director of Skull Base and Pituitary Surgery
Rutgers University, New Jersey Medical School
RWJ Barnabas Health

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

Register here

Date: January 9, 2019

Time: 3:00PM- 4:00 PM Pacific Standard Time, 6:00 PM – 7:00 PM Eastern Standard Time

 

Learning Objectives:

  • To understand the medical therapies for prolactinomas
  • To understand the roles of surgery for prolactinomas
  • To understand the roles of radiation for prolactinomas

Presenter Bio:

Dr. James K. Liu is the Director of Cerebrovascular, Skull Base and Pituitary Surgery at the Rutgers Neurological Institute of New Jersey, and Professor of Neurological Surgery at Rutgers University, New Jersey Medical School. He is board certified by the American Board of Neurological Surgery, and has a robust pituitary tumor practice at University Hospital and Saint Barnabas Medical Center.

Dr. Liu graduated summa cum laude from UCLA with Phi Beta Kappa honors, and obtained his MD from New York Medical College with AOA honors. After completing a neurosurgery residency at the University of Utah in Salt Lake City, he was awarded the Dandy Clinical Fellowship by the Congress of Neurological Surgeons, and obtained advanced fellowship training in Skull Base, Cerebrovascular Surgery & Neuro-oncology at the Oregon Health & Science University in Portland.

Dr. Liu is renowned for his comprehensive treatment of complex brain tumors and skull base lesions, including pituitary tumors, acoustic neuromas,meningiomas, craniopharyngiomas, chordomas, and jugular foramen tumors. His robust clinical practice encompasses both traditional open and minimally invasive endoscopic endonasal skull base approaches. He also specializes in microsurgery of cerebrovascular diseases including aneurysms, arteriovenous malformations (AVMs), cavernous malformations, and carotid artery stenosis. He also has expertise in cerebrovascular bypass procedures for moya moya disease, carotid artery occlusion, vertebral artery occlusion, complex aneurysms and skull base tumors, as well as endoscopic-assisted microvascular decompression for trigeminal neuralgia and hemifacial spasm.

As one of the most active researchers in his field, Dr. Liu has published extensively with over 250 peer-reviewed publications and 25 textbook chapters. He has taught many hands-on cadaver dissection courses in skull base surgery and has lectured extensively nationally and internationally throughout North America, Latin America, Europe, and Asia. Dr. Liu’s research is focused on the development of innovative and novel skull base and endoscopic techniques, quantitative surgical neuroanatomy, microsurgical and microvascular anastomosis skills training, virtual surgical simulation, pituitary tumor biology, and clinical outcomes after skull base and cerebrovascular surgery.

Dr. Liu is an active member of the American Association of Neurological Surgeons, Congress of Neurological Surgeons, North American Skull Base Society, Pituitary Network Association, The Facial Pain (Trigeminal Neuralgia) Association, AANS/CNS Cerebrovascular Section, Tumor Section. He serves on the medical advisory board of the Acoustic Neuroma Association of New Jersey, and is the current Secretary-Treasurer of the International Meningioma Society.

💉 Helpful Doctors: Arizona

Donna’s Doctor. She said on the message boards

“I Went to my Endo appt yesterday (prepared) I had a list of all of my symptoms and a few photos of me to show the dramatic changes that my body has gone through over a short period of time. Without my prompting, He is sure that I have Cushings. …The endo walked in the room, introduced himself, took a good look at me and my pictures and asked me if I had ever heard of Cushings? He told me that I was in good hands and that he would set me up with a great neurosurgeon.”

Dr. Alexander Zwart. He is located in Tucson Arizona.

Tucson Endocrine Associates.

5910 N La Cholla Blvd.

Tucson Arizona, 85741.

(520) 297-0404

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💉 Helpful Doctors: Pennsylvania

 

Dr. Julia Kharlip
Hospital of University of Pennsylvania
Spruce St
Philadelphia, PA

Endocrinologist specializing in Cushing’s

 

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📞 Livestream the Rare Disease Congressional Caucus Briefing December 4th

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.