This conference will present the newest approaches and techniques in the diagnosis and treatment of pituitary adenomas, including acromegaly and Cushing’s disease. Diagnosis and treatment will be covered from the interdisciplinary and interprofessional perspective of endocrinology, radiology, neuro-ophthalmology, neurosurgery, and radiation oncology. Didactic presentations will include case discussions. The conference format, although virtual will provide a significant opportunity for interaction with expert faculty. A simulcast of transsphenoidal surgery will occur throughout the conference with real-time discussion and case review of the progress on the day of surgery, post-op management, surveillance and follow-up care.
Participants will leave with up-to-date, practical information and written resources including: DDAVP stimulation protocol for Cushing’s disease localization, perioperative glucocorticoid and salt-water monitoring protocol, clinic note templates, laboratory testing panels, “Sick Day Rules” letter for patients with adrenal insufficiency. These materials will have immediate clinical application and help streamline care of pituitary patients at the office and during hospitalizations.
LEARNING OBJECTIVES – CME
Upon completion of this conference, participants should be able to:
Evaluate a sellar mass to determine if it is a pituitary adenoma or other lesion
Identify the value and limits of MRI in evaluating a sellar mass
List the potential and limits of endoscopic transsphenoidal surgery for pituitary adenoma
Manage, medically, a patient following endonasal surgery
List the different types of radiation, including linear accelerator (IMRT, Cyberknife), gamma radiation, (Gamma Knife) and proton beam
Treat, medically, patients who have acromegaly and Cushing’s disease
Apply multidisciplinary, interprofessional and interdisciplinary approach in the management of pituitary disease
LEARNING OBJECTIVES – PATIENTS
Upon completion of this course patients, families and advocates will be able to:
Identify the latest advances in pituitary tumor treatment
Demonstrate familiarity with the terminology and technical aspects of pituitary tumor care
Demonstrate patient-active behavior in working with the healthcare team to make ongoing treatment decisions
WHO SHOULD ATTEND
This activity has been designed for endocrinologists, neurosurgeons, ophthalmologists, gynecologists, general radiologists, nurse practitioners, nurses, residents and fellows. Additionally, patients and their caregivers, family members, advocates and members of the public who may benefit from understanding current innovative approaches to pituitary tumor care are invited.
Robert Heller, M.D., has joined Albany Med’s Department of Neurosurgery and has been named assistant professor of neurosurgery at Albany Medical College. He specializes in the surgical treatment of pituitary tumors, meningiomas, acoustic neuromas and gliomas. He is also skilled in stereotactic radiosurgery, a precisely targeted form of radiation therapy to treat tumors.
As a cranial and skull base surgeon, Dr. Heller will work with a team comprised of neurosurgeons, radiation oncologists, and ear, nose and throat surgeons who make up Albany Med’s Pituitary and Minimally Invasive Cranial Base Surgery Program.
Dr. Heller completed a complex cranial and skull base neurosurgery fellowship at Tampa General Hospital and University of South Florida in Tampa. He completed his residency training at Tufts Medical Center in Boston, where he also received his medical degree. His research interests include clinical outcomes in minimally invasive approaches to skull base surgery, and he has authored or co-authored nearly two dozen journal articles and book chapters. His professional society memberships include the American Association of Neurological Surgeons and the North American Skull Base Society.
He resides in Delmar.
Dr. Heller is seeing patients at Albany Med’s Department of Neurosurgery at 43 New Scotland Ave. To schedule an appointment or for more information, call the Department of Neurosurgery at (518) 262-5088.
Dr. Friedman is getting a lot of emails on booster shots versus third shots. Third shots are for immuno-compromised patients that the FDA is recommending for a small group of patients The FDA also has the intention to soon make booster doses widely available to all healthy individuals. I am writing to clarify the difference between booster shots and third doses.
Third Doses for Immuno-Compromised Patients
The purpose of a third dose of mRNA vaccine is to give immuno-compromised patients the same level of protection that two doses provide someone who has a normal immune system. It is recommended that the following people get a third dose
Been receiving cancer treatment for tumors or cancers of the blood
Received an organ transplant and are taking medicine to suppress the immune system
Received a stem cell transplant within the last two years or are taking medicine to suppress the immune system
Been diagnosed with moderate or severe immunodeficiency conditions (such as DiGeorge syndrome, Wiskott-Aldrich syndrome)
An advanced or untreated HIV infection
Been under active treatment with high-dose corticosteroids (> 20 mg of prednisone or 100 mg of hydrocortisone) or other drugs that may suppress immune response
Dr. Friedman thinks it is unlikely that any of his patients have these conditions. Patients with Cushing’s syndrome, Addison’s, diabetes or thyroid disorders do not qualify.
In contrast, a Booster Dose is for Patients With Healthy Immune Systems
A booster dose—which is different from a third dose for immuno-compromised patients—is for healthy patients and is meant to enhance immunity and may protect against new variants of the virus.The Biden administration has announced that it intends to make booster doses available for people with healthy immune systems in September 2021, after they are authorized or approved by the FDA. This has not happened yet, but when it happens, Dr. Friedman would encourage his patients to get it.
Dr. Friedman is expecting a booster shot against the Delta variant to be released in the fall of 2021 and would recommend that for his patients.
Dr. Friedman wishes everyone to stay healthy.
Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies.
Join us for a variety of interactive and educational events, meet-ups, workshops and networking opportunities. Here you’ll have the opportunity to connect and engage with others in the rare disease community, while experiencing the sense of community and belonging we’ve missed so much. Gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies you can implement immediately to accelerate change.
The 2021 RARE Patient Advocacy Summit is a virtual event, happening Monday, September 27, 2021 through Wednesday, September 29, 2021.
2021 RARE Patient Advocacy Summit virtual registration is now open!
The award will presented to Dr. Oyesiku at the Society’s 2021 Annual Meeting August 8-11.
Nelson M. Oyesiku, MD, PhD, FACS, Chair Chair of the UNC School of Medicine Department of Neurosurgery, will receive the Distinguished Service Award given by the Society of University Neurosurgeons at their 2021 Annual Meeting in Whitefish, Montana, August 8-11.
Prior to joining the UNC faculty on April 1, 2021, Dr. Oyesiku was Professor of Neurological Surgery and Medicine (Endocrinology) at Emory University, Atlanta, Georgia and the Inaugural Daniel Louis Barrow Chair in Neurosurgery, Vice-Chairman of the Department of Neurological Surgery and Director of the Neurosurgical Residency Program. Dr. Oyesiku’s clinical expertise is pituitary medicine and surgery. Dr. Oyesiku was co-director of the Emory Pituitary Center and has developed one of the largest practices entirely devoted to the care of patients with pituitary tumors in the country and has performed over 3,700 pituitary tumor operations. Dr. Oyesiku obtained his MD from the University of Ibadan, Nigeria. He obtained an MSc in Occupational Medicine from the University of London, UK and completed a PhD in Neuroscience at Emory University. He completed his Surgery Internship at the University of Connecticut-Hartford Hospital and obtained his neurosurgical training at Emory University, Atlanta. He is board-certified by the American Board of Neurological Surgery. He received an NIH K08 Award and Faculty Development Award from the Robert Wood Johnson Foundation was a recipient of an NIH R01 award and PI of the NIH/NINDS R25 Research Education Program for Residents and Fellows in Neurosurgery. Dr. Oyesiku has served on several NIH Study Sections. Dr. Oyesiku’s research is focused on the molecular pathogenesis of pituitary adenomas, and tumor receptor imaging and targeting for therapy.
Dr. Oyesiku has served on various state, regional, national and international committees for all the major neurosurgical organizations. He has served on the Board of Directors and as Chairman of the American Board of Neurological Surgery. He was on the ACGME-Residency Review Committee of Neurosurgery. He is a Fellow of the American College of Surgeons and has served on its Board of Governors. Dr. Oyesiku has been President of the Congress of Neurological Surgeons. He has served as Secretary/Treasurer and President of the Georgia Neurosurgical Society, President of the Society of University Neurosurgeons, and Vice-President of the American Academy of Neurological Surgeons. He is President of the International Society of Pituitary Surgeons. He is President-Elect of the World Federation of Neurological Surgeons.
Dr. Oyesiku is Editor-in-Chief of NEUROSURGERY, OPERATIVE NEUROSURGERY and NEUROSURGERY OPEN – leading journals in neurosurgery. He is author of over 180 scientific articles and book chapters.
He has been selected by his peers as one of The Best Doctors in America and was selected by the Consumer Research Council of America as one of America’s Top Surgeons. He is named in Marquis Who’s Who in America. He is a member of the Honor Medical Society – Alpha Omega Alpha. He was awarded the “Gentle Giant Award” by the Pituitary Network Association for his services to Pituitary Surgery and Medicine. He is on the Medical Advisory Board of the Cushing’s Support and Research Foundation. He has been visiting professor and invited faculty at several departments of neurosurgery in the United States and abroad.
All of our country is very encouraged by the declining rates in both COVID-19 infections and death, due mostly to President Trump’s vaccine production and trial effort called Operation Warp Speed and President Biden’s vaccine distribution efforts. As of July 2021, The United States has administered 334,600,770 doses of COVID-19 vaccines, 184,132,768 people had received at least one dose while 159,266,536 people are fully vaccinated. The pandemic is by no means over, as people are still getting infected with COVID-19 with the emergence of the Delta Variant. In fact, recently cases, hospitalizations and deaths due to COVID-19 have gone up. In Los Angeles, the increased infection rate has led to indoor mask requirements. The main reason that COVID-19 has not been eliminated is because of vaccine hesitancy, which is often due to misinformation propagated on websites and social media. One of Dr. Friedman’s patients gave him a link of an alternative doctor who gave multiple episodes of misinformation subtitled “Evidence suggests people who have received the COVID “vaccine” may have a reduced lifespan” about the COVID-19 vaccine that Dr. Friedman wants to address. Almost 30% of American say they will not get the vaccine, up from 20% a few months ago.
Statistics are that people who are vaccinated have a 1:1,000,000 chance of dying from COVID, while people who are unvaccinated have a 1:500 chance of dying from COVID. I think most people would take the 1:1,000,000 risk. Dr. Friedman has always been a proponent of the COVID-19 vaccine because he is a scientist and bases his decisions on peer-reviewed literature and not social media posts. As we are getting to the stage where the COVID-19 pandemic could end if vaccination rates increase, he feels that it is even more important for people to get correct information about the COVID-19 vaccine.
MYTH: People are dying at high rates from the COVID-19 vaccine and the rates of complications and deaths are underreported. FACT: The rates of complications and deaths from the vaccine are overreported. It is a fact that when 200 million people get a vaccine, some of them will get blood clots, some of them will have a heart attack, some of them will have strokes, some of them will have optic neuritis and some will have Guillain-Barré syndrome. These complications may not be due to the vaccine, but people remember that they got the vaccine recently. Anti-vaccine websites seem to play up on this and give false information that COVID-19 complications are underreported and fail to note that there is no control group, so we do not know how many people would have gotten blood clots, strokes, and heart attacks if they did not get the vaccine. For example, one anti-vaccine website highlighted a Tamil (Indian) actor Vivek, who died of a massive heart attack 5 days after getting the COVID-19 vaccine and tried to make a case that the vaccine caused that. Of course, the massive heart attack was due to years of buildup of cholesterol in his coronary arteries and had nothing to do with the COVID-19 vaccine. In fact, the complications attributed to the COVID-19 vaccine occur less frequently in those vaccinated than unvaccinated. The only complication that seems to possibly be more common in people who get vaccinated is blood clots, and the rate of that is still quite low. Overwhelmingly, the COVID-19 vaccine is effective and safe.
MYTH: I had COVID-19 before. I don’t need a vaccine. Natural immunity is better than a vaccine immunity. FACT: Most studies have shown that the COVID-19 vaccines are more effective, with longer-lasting immunity, than only having the COVID-19 infection. The immunity after natural infection varies and may be quite minimal in patients who had mild COVID-19 and likely declines within a couple of months of infection. In contrast, those who got the vaccine seem to have high levels of immunity even months after getting the vaccine. The vaccine also protects against the COVID-19 variants. If someone had one variant, it is unlikely that their natural immunity would protect them against other variants.
MYTH: The COVID-19 vaccine leads to spike proteins circulating in your body for months after the vaccine. FACT: The mRNA from the vaccine, the spike protein that it generates, and all of the products of the COVID-19 vaccine are gone within hours, if not days, and do not hang around the body.
MYTH: There is likely to be long-term effects, including infertility effects, of the COVID-19 vaccine. FACT: As the viral particles and proteins are gone within a couple hours to days and the vaccine only enters the cytoplasm and does not enter the DNA, it is very unlikely that there will be long-term effects. So far, the clinical trials of the COVID-19 vaccine have not resulted in any detrimental effects, and it has been a year since the trials started. Other vaccines have been used safely and do not give long-term side effects. There is no reason to think that this vaccine would give long-term side effects, and we have not seen any evidence of long-term side effects currently. Pregnant women who received COVID-19 vaccines have similar rates adverse pregnancy and neonatal outcomes (e.g., fetal loss, preterm birth, small size for gestational age, congenital anomalies, and neonatal death) as with pregnant women who did not receive vaccines.
MYTH: People with autoimmune disease should not get the vaccine. FACT: Persons with autoimmune disease are likely more susceptible to COVID-19, and they should especially get the vaccine. People with preexisting conditions, including autoimmune diseases, have been shown to be give generally excellent immune responses to the vaccine, and it should especially be given to patients with Addison’s disease or Cushing’s disease who may have higher rates of getting more severe COVID-19. In fact, the CDC as well Dr. Friedman recommends EVERYONE getting the vaccine, except 1) those under 12, 2) those who had an anaphylactic reaction to their first COVID-19 vaccine. Patients with AIDS, and those on immunosuppressive therapy for cancers, organ transplants and rheumatological conditions, may not be fully protected from vaccines and should be cautious (including wearing masks and social distancing), but still should get vaccinated.
MYTH: Patients with autoimmune diseases, and other conditions do not mount an adequate immune response to the vaccine and may even should get a booster shot. FACT: The only patients that have been found not to have a good immune response to the vaccine is those with AIDS or on immunosuppressive drugs that are used in people with rheumatological diseases or transplants. With these exception, patients appear to mount a good immune response to the vaccine regardless of their preexisting condition and do not need a booster shot.
MYTH: Why should I bother with the vaccine if it is going to require a booster shot? FACT: It is unclear whether booster shots will be required or not. Currently, the CDC and FDA do not recommend a booster shot, but Pfizer has petitioned the FDA to consider it and is starting more studies on whether a booster shot is effective. It is currently believed that the vaccine retains effectiveness for months to years after it is given.
MYTH: We are almost at herd immunity now. Why bother getting a vaccine? FACT: We are not at herd immunity as people are still getting sick and dying from COVID-19. Dr. Friedman recently lost to COVID-19 his 43-year old patient with obesity and diabetes at MLK Outpatient Center. There are pockets in the United States with low vaccine rates, especially in the South. The vaccine is spreading among unvaccinated people, while the rate of spread among vaccinated people is quite low. Approximately 98% of those hospitalized with COVID-19 are unvaccinated. It is important from a public health viewpoint for all Americans to get vaccinated.
MYTH: There is nothing to be concerned with about the variants. FACT: Especially the delta variant appears to be more contagious and aggressive than the other variants currently. The vaccines do appear to be effective against the delta variant but possibly a little less so. Variants multiply and can generate new variants only if they are infected into patients who are unvaccinated. To end the emergence of new variants, it is important for all Americans to get vaccinated.
MYTH: I could just be careful, and I will not get the COVID-19 vaccine. FACT: Thousands of people who were careful and got COVID-19 and either died from it or became extremely sick. The best prevention against getting COVID-19 is to get vaccinated.
MYTH: I am young. I do not have to worry about getting COVID. FACT: Many young people have gotten sick and died of COVID-19 and also, they are contagious and can spread COVID-19 if they are not vaccinated. Everyone, regardless of their age, as long as they are over 12, should get vaccinated.
MYTH: If children under 12 are not vaccinated, the virus will still spread. FACT: The FDA and CDC do not recommend the vaccine for those under 12. They are very unlikely to get COVID-19 and are very unlikely to transmit it to others. They are the one group that does not need to get vaccinated.
MYTH: COVID-19 vaccines are an experimental vaccine. FACT: While it is true that the FDA approved COVID-19 vaccines were granted emergency use authorization in December 2020 (Pfizer and Moderna) and Johnson and Johnson in February 2021. Both Pfizer and Moderna have petitioned the FDA for full approval, but by no means are these vaccines experimental. As mentioned, over 180 million Americans and many more worldwide have received the vaccine. This is more than any other FDA approved medication. Clinical trials are still ongoing and have enrolled thousands of people and Israel has monitored the effect of COVID-19 vaccines in 7 million Israelis.
MYTH: The COVID-19 vaccine is a government plot to kill or injure people or a war against G-d. FACT: Yeah right
If you want the pandemic to end, please get vaccinated and encourage your friends and colleagues to get vaccinated. For more information or to schedule an appointment with Dr. Friedman, go to goodhormonehealth.com
It’s unbelievable but the idea for Cushing’s Help and Support arrived 21 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.
The conference brings together patients, families, healthcare professionals, and other supporters for learning, sharing, and connecting.
Due to the ongoing COVID-19 pandemic, the general sessions, breakout workshops, and networking will again be virtual. The sessions, which will offer perspectives from patients, caregivers, and the medical community, will air live and be recorded for later viewing. Throughout the forum, participants will be able to visit the exhibit hall and have peer meetings with other attendees.
Also this year, the Rare Impact Awards will return as part of the program. That presentation, on June 28, honors individuals, organizations, and industry innovators for exceptional work benefitting the rare disease community.
“The health and well-being of people living with rare diseases, their loved ones and those working to improve their lives continues to remain a top priority for all of us here at NORD,” the organization stated in its forum announcement.
“The COVID-19 pandemic brought us new ways to engage with our community and our 2020 virtual program was the most successful forum to date! In 2021 we will continue to work hard to keep our community healthy and safe while engaging in this impactful program,” NORD said.
Registration for the “patient-centric” event is $39 for patients, caregivers, students, and NORD patient organization representatives. The cost is $75 for professional advocates, people from academia, physicians, and government representatives, and $500 for NORD corporate council members. For pharmaceutical, insurance, or other representatives, registration is $650.
As for the agenda, the opening discussion will be on “The Patient-Professional Partnership” and will include three stories on the close bond between patients and their care professionals.
Breakout sessions for Saturday, June 26 will include “Coping with Grief and Anticipatory Grief,” “Shared Decision-Making with Your Care Team,” and “Working While Rare” as first offerings, followed by “Getting Involved in Clinical Research: Finding and Preparing for Clinical Trials,” “Navigating Insurance, Social Security Disability and Patient Assistance Programs,” and “The ABCs of Advocating for Your Child’s Education” in the second group of workshops.
Those will be followed by a plenary discussion on the topic “Building Resilience in a Time of Unknowns.” The speakers will explore how patients coped while waiting for a diagnosis, how they are faring while waiting for new treatments, and how they have kept it together during the pandemic.
June 27 will start with an opening plenary discussion titled “The Rare Sibling Experience.” Here, three siblings of rare disease patients will share their experiences, including how they became advocates.
Breakout sessions on this day will include “Fighting Back and Fighting Forward Through Advocacy,” “Palliative Care: Debunking the Myths,” “Rare in the Family: Navigating the Roles of Patient, Parent, and Caregiver” in the first set of discussion groups. Later offerings that Sunday will include “Aging with a Rare Condition,” “Finding Your Community and Building Your Support Network,” and “The Intersection of Race, Ethnicity, and Equity with Diagnosis and Treatment Access.”
The closing plenary discussion, titled “Rare Breakthroughs Now and on the Horizon,” will cover the latest advances in the diagnosis, treatment, and care of rare diseases.
Early this year, NORD put out a call out for individuals who were willing to share their real-life experiences with rare diseases at the conference. In all, including physicians, nurses, and other healthcare professionals, the conference will feature some 55 speakers. Access to the virtual program will be provided via email the week of the event.