Dear Colleagues,
This is my final President’s letter and in a few days we will be celebrating our 50th anniversary with a transformative annual meeting (April 28th-May 1st). Please see my personal invite to all of you below.
It has been an extraordinary year. With some promise we are beginning to emerge from the pandemic. We hope our political climate will rise to the many challenges and return to one of dignity, respect and caring for all.
I thought at this time I would share a little known PES “historical tidbit.” When I first applied to LWPES (PES) as a senior fellow (it was by election then, and very selective), Dr. MacGilvray wrote my nominator, Lenore Levine, that although I seemed qualified I only had one paper and one in press, so they would defer my application for a year. Fortunately, I succeeded the next year to be elected. What is the lesson? Today we have become a more egalitarian society and are open to all who express an interest in the care of children and adolescents with endocrine disorders, be it a bench researcher, clinician, advanced practice partner, or most importantly students and fellows.
So, in the short time before the meeting I want to alert you to a new educational video resource for families with an infant undergoing evaluation for DSD that we will be posting on our website. This 8-minute video provides a detailed introduction to the concepts related to DSD in the context of a supportive message. This video will be an invaluable tool for NICU staff and general pediatricians, as well as pediatric endocrinologists and our teams, when communicating challenging information with families. The video was developed by a subcommittee of the DSD SIG (in collaboration with the PES Education Committee) led by Kanthi Bangalore Krishna and Selma Witchel, with digital media expertise provided by Lauren Wood Heickman, and collaborative team effort by Anshu Gupta, Yee-Ming Chan, Sue Stred, Courtney Finlayson and Meilan Rutter. The video incorporates recommendations from parents, patient advocates and interdisciplinary DSD specialists. The video will be available on the PES website. Members and non-members will be able to access the video with accompanying links to additional resources. We hope you will watch this video and share it with your colleagues, trainees and, most importantly, your patients and families.
We are also working with the D&T committee and a special ad-hoc committee headed by Dr. Andy Bauer regarding the statement below from the FDA re: contrast media drug safety and thyroid issues. More to come shortly. Look for an eblast.
I also recently attended the ICGC (Intersociety Clinical Guidelines Committee) meeting by zoom—would have loved to visit Australia! At the moment the following guidelines are underway including:
- Neonatal diabetes: a PES initiative led by Siri Atma Greely of the University of Chicago.
- Congenital hyperinsulinism: A PES initiative led by Paul Thornton, soon to have input from the Intersociety membership.
- A consensus statement on the management of the child born small for gestational age—Anita Hokken-Koelega from ESPE is the lead and it will be submitted to Endocrine Reviews.
- Turner Syndrome guideline led by Philippe Backeljauw of PES—nearing completion.
- Endocrine problems of children and adolescents with hemoglobinopathies
- New guideline proposals are welcome for the coming year.
Finally it has been an enormously busy but rewarding year for PES with respect to our advocacy efforts.
- Safe and Supported Children: Bill Banning Conversion Therapy for Minors
- Transgender health statements and amicus briefs and letters
- Member survey asking if PES should support access to health care for transgender youth aligned with current clinical guidelines (amicus briefs, press releases, co-plaintiff on legal cases): 95.4% answered YES
- Letter to Congress urging reauthorization of the Special Diabetes Program
- Letter supporting and promoting the VACCINES Act, designed to help lower vaccine hesitancy and improve immunization rates
- Letter discussing the problem of increasing insulin price
- Telehealth access during the COVID-19 crisis (waiving copays and deductibles)
- COVID-19 Screening in under-served populations (ADA)
- Closer look at the impact of COVID-19 in people with Rare & Chronic Disease
- Letter opposing the modification of the period of authorized stay for certain nonimmigrant visas being proposed by U.S. Immigration and Customs Enforcement (ICE)
- Funding the Pediatric Subspecialty Loan Repayment Program
- DAA letter to USPSTF on Peds Diabetes Screening
To sign off, it has been my tradition to insert a poem or non-medical message in most of my letters to you.
In the spirit of hope for the future and a wonderful Spring as well as year to come, I copy the beginning lines of “Here Comes the Sun” by the Beatles (from their 1969 album Abbey Road, written by George Harrison and produced by George Martin).
Here comes the sun
Here comes the sun,
And I say, It’s all right
Little darling
It’s been a long, cold lonely winter
Little darling
It feels like years since it’s been here
Here comes the sun
Here comes the sun,
And I say, It’s all right
Little darling
The smiles returning to the faces
Little darling
It seems like years since it’s been here
Here comes the sun
Here comes the sun,
And I say, It’s all right
And of course, wishes for a happy Passover, Easter, Ramadan and other spring holidays/Holy Days.
I sign off with admiration and respect for all that you do. Please join me in welcoming Craig Alter, MD as your new incoming President at the 50th Anniversary meeting April 28-May 1st, 2022.
Sharon
Sharon Oberfield, MD
News from the PES EDI taskforce: May is Asian and Pacific American Heritage Month
Click here to learn more: https://pedsendo.org/education-events/equity-diversity-and-inclusion-initiative/
50th Anniversary: PES celebrates 50 years! Check out our projects to celebrate this important milestone:
https://pedsendo.org/education-events/pes-50th-anniversary/
Introducing NIH’s New Scientific Data Sharing Website
By Mike Lauer
I am very pleased to announce the availability of a new website on Scientific Data Sharing. Whether you are involved in an NIH-funded project and want to understand which sharing policies apply to your research and how to comply, or you are a researcher looking to access scientific data from NIH-affiliated repositories, this site is for you.
Read more: Introducing NIH’s New Scientific Data Sharing Website – NIH Extramural Nexus
History Tidbit: Nicolae Paulsecu (Nicola Paulesco) (October 30, 1869-July 17, 1931)
Submitted by Alan D. Rogol, MD, Ph.D
APP Member Spotlight – Diana Perez, MPAS, PA-C
Meet:Diana https://pedsendo.org/member-spotlight/app-spotlight/april-app-spotlight-diana-perez-mpas-pa-c/