PENS Reporter - Summer 2017

VOL 29/NO 1

R

PENS

eporter

A annual publication of the Pediatric Endocrinology

President’s

Nursing Society

In This Issue: 1 President’s Report 3 Meet Your PENS Board of Directors 4 Celebrating PENS’ 30th Anniversary in Minneapolis 5 Captured Memories from PENS 2017 National Conference 7 PENS Award Winners 8 The Education Committee is ready to go as we embark on 2017 9 PENS Professional Nurse and Advanced Practice Nurse Recognition Program 10 R-E-S-E-A-R-C-H presence at PENS 2017 11 PENS Position Statement on Bullying Prevention 14 The MAGIC Foundation 15 Human Growth Foundation

Report

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elcome to Summer!

I know spring is supposed to be the time of year for renewed life, but for me, it’s summer.

Long days out in the sun, hoping to get a little Vitamin D through my sunscreen, and lots of activities to rejuvenate the mind and spirit. So it is fitting that my inaugural article is in the summer.

Twenty years ago, when I joined this organization, I never dreamed I would be in endocrine for twenty years, let alone President of PENS. I am honored to have been a part of this organization for this long and that you, the members, entrusted me with your organization.

That said, my goals are simple, I wish to continue the wonderful educational opportunities this organization has always provided at the national conference. This year in Minneapolis was no exception. We had many wonderful and engaging speakers once again, thanks to the hard work of our Conference Planning Committee. I come away year after year thinking “so much to learn, so little time!” I hope to see you next year in Bonita Springs, Florida!

I would also like to continue our partnership with the Journal of Pediatric Nursing so that we can continue to educate not only endocrine nurses but also other pediatric nurses who may come in contact with our endocrine patients. Hopefully increasing the nonendocrine nurse’s confidence to care for our patients.

This year, we will be adding four webinars to PENS’ commitment to education. I hope to continue to grow the learning opportunities that we offer, including new webinars every year. Suggestions are always welcome!

Another educational opportunity this year that PENS and I are very excited to be a part of is the first International Pediatric Endocrine Nursing Summit which will be held September 13, 2017 in Washington, DC. This is the day before the Pediatric Endocrinology Society meeting. It is a collaboration between PENS, CPEN (Canadian Pediatric Endocrinology Nurses), ENSA (Endo Nurses Society of Australia Inc), and ESPEN (European Society for Pediatric Endocrinology Nurses). This Summit is shaping up to be a jam packed day of continued on page 2

P.O. Box 14516 Lenexa, KS 66285-4516  913.222.8657  877.936.7367  FAX: 913.222.8606  PENS@KELLENCOMPANY.COM

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“President’s Report” continued from page 2 education, with speakers from several different countries.

2017-2018

My other goal is to explore opportunities for PENS to be increasingly selfsustaining. We all appreciate our partnerships with pharma, however, we all have seen changes in the guidelines over the years. Unfortunately, I anticipate that these guidelines will continue to evolve so I hope to begin to find ways to position PENS to be able to endure.

President Cheryl Switzer, MSN, RN, CPNP, CDE

I look forward to serving you these next two years as your PENS President. I welcome your thoughts and ideas for this organization.

Immediate Past President Maryann Johnson, BSN, RN, M.Ed.

Sincerely,

Treasurer Margaret (Meg) Keil, PhD, CRNP

Cheryl Switzer, MSN, RN, CPNP, CDE PENS President

Secretary Tammy Nenadovich, RN Director Rebecca Crespi, BA, RN, MSN, CPNP, CDE Director Maureen Dever, MSN, PPCNP-BC, CDE Director Catherine Flynn, RN, MSN, APRN, CDE Executive Director JerrieLynn Kind, Executive Director/ Ex-Officio Board Member

The PENS Reporter is published quarterly by the Pediatric Endocrinology Nursing Society (PENS). Views expressed herein do not necessarily reflect the opinion of PENS. Copyright © 2017 Pediatric Endocrinology Nursing Society Editor Tammy Nenadovich, RN PENS Executive Office 4400 College Boulevard Suite 220 Overland Park, KS 66211 Direct: 913.222.8657 Toll-Free: 877.936.7367 Fax: 913.222.8606 Website: www.PENS.org COPY SUBMISSIONS Please submit all future articles or items by e-mail to Tammy Nenadovich at nenadot@gmail.com.

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Meet Your PENS Board Members 2017-2018 President Cheryl Switzer, MSN, RN, CPNP, CDE Term ends 2019

Director Rebecca Crespi, BA, RN, MSN, CPNP, CDE Term ends 2019

Immediate Past President Maryann Johnson, BSN, RN, M.Ed. Term ends 2018

Director Maureen Dever, MSN, PPCNP-BC, CDE Term ends 2018

Treasurer Margaret (Meg) Keil, PhD, CRNP Term ends 2019

Director Catherine Flynn, RN, MSN, APRN, CDE Term ends 2018

Secretary Tammy Nenadovich, RN Term ends 2018

Executive Director JerrieLynn Kind, Executive Director/ Ex-Officio Board Member

We Are PENS and We Are Noteworthy!

SO STAND UP AND BE RECOGNIZED AND SHARE YOUR NEWS! WE ARE BRINGING BACK AN OLD COLUMN CALLED “MEMBERS IN THE NEWS” in our monthly Insider Newsletter

Have you recently changed positions or received a promotion?

Have you recently received an award related to your professional responsibilities or an academic honor?

Have you recently been published?

Have you recently made a presentation at a professional conference or a meeting?

Are you serving in an elected or an appointed position in a professional or governmental organization?

Have you recently traveled to another country to teach or learn more about our specialty?

IF YOU CAN ANSWER “YES” TO ANY OF THESE QUESTIONS ... PLEASE TELL US ABOUT IT! SEND YOUR NEWS FOR THE NEXT INSIDER NEWSLETTER TO PENS@kellencompany.com.

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Celebrating PENS’ 30th Anniversary

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in Minneapolis

he brisk weather in Minneapolis did not put a damper on the celebration of PENS’ 30th Anniversary Conference! A huge timeline adorned the windows of the reception area and a wonderful slide presentation of pictures of past conferences allowed us to reminisce about many fun times together. Then a flash mob welcomed new and old colleagues as we enjoyed an evening of celebration!

Kudos to the 30th Anniversary Task Force, Chaired by Mary Burr, and assisted by Kathy Clark and Fran Waite, who worked and practiced dance moves ‘behind the scenes’ to plan these fun activities to mark this special occasion.

This year we were proud to offer an outstanding preconference program, ‘Growth Matters Workshop: An Introduction to Growth and Growth Disorders.’ We appreciate the generous support from Novo Nordisk to help provide this unique educational offering. Many thanks to the Pre-conference organizing committee and faculty: Maureen Dever, Maryann Johnson, Terri Lipman, and Chair, Becky Thompson.

I was honored to serve again as the Conference Planning Committee (CPC) Chair and would like to acknowledge my outstanding team of CPC members and staff who worked tirelessly to develop the conference program and expertly handle all the logistics of organizing the conference:  Vicki Costa  Rebecca Crespi  Kelly DeGrote  Maryann Johnson  Sheri Luke  Cathy Metzinger  Jane Torkelson  Dede Gish-Panjada, PENS Education Program Coordinator  Melinda O’Brien, Incoming PENS Education Program Coordinator:  Caitlin Arnold, Meetings Manager  JerrieLynn Kind, Executive Director We would like to express our appreciation and gratitude to all our sponsors and exhibitors. Your support and contribution is crucial to the success of our conference.

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Our members enjoyed the opportunity to meet with you, get hands-on experience with products, and learn firsthand about updates or new products and services related to patient care. Special thanks to our Diamond Sponsors, Eli Lilly and Novo Nordisk; our Ruby Sponsor, Genentech; our Sapphire Sponsors, Ferring and Sandoz; and our Topaz Sponsors, Endo Pharmaceuticals, Human Growth Foundation, and Pfizer.

A huge thank you to all our invited speakers, member and guest presenters and member poster authors who did an outstanding job sharing their educational expertise with us to contribute to a successful conference program.

This year we were pleased to introduce a new smartphone App that allowed attendees to access information about conference sessions, speakers, slide handouts, and more.

An important reminder to go to the PENS website and complete the evaluations in order to receive CNE credit and also to share your comments and suggestions about the conference. We value the input from our members as the CPC plans next year’s conference.

Based on the success of last year’s open committee meeting at the conference, we again invited interested PENS’ members to attend the session to learn more about the CPC and submit an application to serve, if interested.

We were pleased at the response of those who attended the meeting and expressed an interest in volunteering to serve on the committee. The selection of the committee members for the 2018 CPC will be completed soon. I would like to congratulate Kelly DeGrote, the incoming 2018 CPC Chair. Kelly has served on the CPC for the past few years and will do a terrific job as Chair.

Mark your calendars and plan to attend the 2018 PENS National Conference in Bonita Springs, Florida!

Watch your email for the call for presentations and poster abstracts at the 2018 conference.

In closing, mark your calendars and plan to attend the First International Pediatric Endocrinology Nursing Summit (IPEN) September 13, 2017 in Washington, DC. Thank you to the working group, with members from PENS and our international colleagues, and Chaired by Nicole Kirouac, for all their efforts to organize this event.

Meg Keil, Outgoing CPC Chair

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Captured Memories from PENS 2017 National Conference

Lots of fun, friends and education were found at the 2017 PENS Conference in Minneapolis! We hope you took some snapshots of your memories while attending!

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“Captured Memories” continued from page 6

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Congratulations to all the PENS Award Winners honored at this year’s conference!

During this year’s award breakfast, sponsored by our friends at Pfizer, we recognized several special members:

Excellence in Advanced Practice Award

Terri Lipman, PhD, CRNP, FAAN Our Poster awards, sponsored by our friends at Human Growth Foundation were also honored:

Best Informational Poster Award

Best Nursing Research Poster Award (not pictured)

Morgan Grabinoski, BSN Screening for Depression in Adolescents with Type 1 Diabetes Mellitus Morgan will receive a scholarship to the International Nursing Summit to present this poster.

Best Case Presentation Poster Award

Amelia Vinson, RN and Lisa Guerra, RN Lipid Screening in Youth These fine individuals have been great PENS volunteers throughout the years!

Our Outgoing Board members:

Michelle McLoughlin, MSN, CRNP, CPNP-AC Classical Congenital Hyperplasia Diagnosed Outside of Newborn Period Linda Burkett, MSN, RN, CDE; Treasurer; 2013-2017 Kevin Lewis, DNP, APRN, PPCNP-BC; Director; 2015-2017 (pictured on page 5) continued on page 8 www.PENS.org

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“Congratulations” continued from page 7

Our Outgoing Committee Chairs:

Our Continuing Committee Volunteers: Carol Howe, PhD, RN, CDE; Research Committee Chair Sharron Close, PhD, MS, CPNP-PC, Grant Director Thank you also to these outgoing members of the nominating committee:

Nicole Kirouac, RN, BN; Nominating Committee Chair; 2015-2017

Isabel Couto, MSN, RN, CPN, NE-BC and Rebecca L. Thompson, BSN, RN, CDE

Conference Reimbursement Scholarships Carolyn Haire, RN-BC; Strafford, Missouri Susan Beauregard, RN, BSN; Phoenix, Arizona Morgan Grabinowski, RN, BSN; Ankeny, Iowa Mako Sather, MSN, RN, CPNP; Littleton, Colorado

Meg Keil, PhD, CRNP; Conference Planning Committee Chair; 2015-2017

The Education Committee is ready to go as we embark on 2017-2018 Members of the Education Committee: Cathy Flynn , Kevin Lewis, Barb Lightner, Lisa Richards, Sara Kahn, Shaylyn McDaniel, Fran Waite, Stephanie Marszal, and Megan Blass The Education Committee is ready to go as we embark on 2017-2018 with a great group of nurse educators.

Again, this year we have many first-time members to the Committee who are anxious to get started on providing the PENS Community with an innovative approach to endocrine nursing education. We will continue the work from the 2016-2017 committee as we update the education section of the website. Several outdated items will be removed and new information will be provided. Most of the patient education handouts were updated this year and are on the website.

Updates are scheduled so that we keep the most up-todate materials and resources on our website. PENS

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Education Committee members have always worked very hard to create these documents for our members to use in practice to educate patients and families.

We will continue to collaborate with our other committees and offer support to them as needed with regards to education. Our mission is to provide resources for our members for their professional development as well as education for families and patients. We have an exciting opportunity to collaborate with the Pediatric Endocrinology Society this year and hope to develop some patient education videos. We are thinking more 21st century.

We continue the mantra of our predecessors, “Let’s Educate and Promote Our Knowledge as Peds Endo Nurses” Respectively Submitted by, Linda J. Burkett, MSN, RN, CDE

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PENS Professional Nurse and Advanced Practice Nurse Recognition Program Here’s how to earn the credentials PEN or AP-PEN PENS is excited to announce the pilot program to accept applications for the PENS Professional Nurse and Advanced Practice Nurse Recognition Program. This program is a portfolio-based program that recognizes the highest levels of practice for RN’s and APRN’s in pediatric endocrinology. After successful evaluation of the portfolio you will be recognized by PENS and be able to use the credentials for RN’s: PEN (Pediatric Endocrine Nurse) or for APRN’s: AP-PEN (Advanced Practice - Pediatric Endocrine Nurse).

The criteria to meet the requirements for professional recognition are quite rigorous. In addition to a practice requirement in the specialty, there are five required categories of professional development and practice required to show the highest level of practice in pediatric endocrinology nursing.

We are currently soliciting nurses and nurse practitioners who are interested in the pilot program to submit

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their portfolio for evaluation. We are looking for two (2) registered nurses and two (2) nurse practitioners who would like to submit their portfolio this fall for evaluation.

Please read the application and criteria as the requirements are quite involved and detailed. While some may meet all the requirements for recognition, we expect many nurses may have additional work ahead of them to be able to be recognized. Members of the Commission are happy to answer questions if you are questioning meeting the criteria for the recognition program.

Please email PENS with your interest or questions about the program. If you are interested in participating in the pilot program, please let us know by August 1, 2017. We will notify successful participants for the pilot program no later than September 1, 2017. Final applications will be due on or before November 1, 2017.

After the pilot group, we plan to have applications accepted twice a year in the spring and fall. Nurses that meet the criteria will be formally recognized at the PENS National Conference.

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R-E-S-E-A-R-C-H presence at PENS 2017 Once again, we enjoyed a R-E-S-E-A-R-C-H presence to PENS 2017! The Research Committee includes a dedicated bunch of us who are committed to fostering and highlighting the research efforts of PENS members.

the Best Case Study award for Classical Congenital Adrenal Hyperplasia Diagnosed Outside of Newborn Period. Please find all abstracts published in the current May/June issue of the Journal of Pediatric Nursing.

Thank you to our 3 speakers who presented their research projects at the General Research Session.

Amy Bluming, a doctoral student mentored by Dr. Sharron Close, presented Clinical Needs and Desires of Patients and Families Affected by Sex Chromosome Variations: Addressing Patent-Centered Care. Nicole Kirouac presented A Nursing Perspective: Best practices for Pubertal Suppression for Individuals with Central Precocious Puberty and Transgender. And I presented Pediatric Diabetes Educators’ Use of Recommended Communication Techniques. It is always exciting to hear about the research work of our members so thank you to our speakers for stepping out of their comfort zone (public speaking makes so many of us anxious) to share their work.

We held a hands-on concurrent session on abstract writing and poster creation. Attendees conducted literature reviews (with help from Amy Bluming ), picked an abstract type, discussed ideas, and WROTE an outline or draft! By deconstructing the abstract writing process into small bits, hopefully we all found writing more approachable and do-able.

We had a wonderful poster session, giving all of us an opportunity to discuss amongst ourselves research projects, new ideas, and interesting cases. Posters represent four different abstract types: research, informational, case study, and product-based. The Research Committee selected three best posters: Morgan Grabinoski received Best Research Poster award for Screening for Depression in Adolescents with Type 1 Diabetes Mellitus; Amelia Vinson and Lisa Guerra, et al. were awarded Best Informational poster for Lipid Screening in Youth; and Michelle McLoughlin received

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So here is a shout out about PENS abstracts! The call for abstract proposals will come out in late summer/early fall with abstract submissions due sometime around Nov 1st . The Research Committee solicits abstracts in the following categories: Research, Informational, Case study, and Product based Industry. Keep alert to things going on in your practice that may be beneficial to share with PENS members and please submit an abstract! The more we share, the more we learn!

Thank to PENS for all the support of members in their research efforts. As an organization, they show their dedication to nursing research in the grants that are available to members. Check our website to learn about the EBP grant, the Research grant, and the Multi-Site Research grant, all submissions due February 1st. Contact Sharron Close with any inquiries.

Carol J. Howe, PhD, RN, CDE

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PENS Position Statement on Bullying Prevention The Pediatric Endocrinology Nursing Society (PENS) is committed to the advancement of the art and science of pediatric endocrinology nursing. This includes establishing standards of practice and a lasting commitment to continued development and refinement of best practices for pediatric endocrine nursing. We believe that excellence in nursing practice is best achieved through concurrent efforts to advance clinical expertise, support professional development, promote nursing research, and recognize nursing excellence. PENS aims to empower nurses worldwide to provide optimal care for children with endocrine disorders. Such children and youth can be at risk for bullying because their physical appearance, behavior, or psychosocial characteristics might differ from those of their peers. Hence, similar to other children and youth, those with endocrine conditions might be bullied, bullies, both bullied and bullies, or bystanders of peer bullying.

The U.S. Centers for Disease Control and Prevention defines bullying as: Any unwanted aggressive behavior(s) by another youth or group of youths, who are not siblings or current dating partners, involving an observed or perceived power imbalance and is repeated multiple times or is highly likely to be repeated.

Bullying may inflict harm or distress on the targeted youth including physical, psychological, social, or educational harm [bold in original]. (Gladden et al, 2014, p. 7) Moreover, the pervasive role that technology plays in modern life has broadened the “classical” notion of bullying to cyber bullying, which includes bullying online or using social media. There is growing evidence and consensus that cyber bullying is similar to other forms of bullying that occur face-to-face, except that it take place through the use of technology (Gladden, et al, 2014; Moreno, 2016, National Academies of Science, Engineering, and Medicine, 2016).

In 2015, approximately 20% of all U.S. high school students in grades 9 through 12 reported having been bullied on school property during the preceding 12 months; nearly 16% of students in those grades reported having experienced electronic bullying (through e-mail, chat rooms, instant messaging, web sites, or texting) (Centers for Disease Control and Prevention,

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2016). Bullying is contextual. It can occur at home, in schools, neighborhoods, and on the internet. Within these contexts, bullying may involve physical or verbal aggression, relational bullying (e.g., harming an individual’s relationships with others), or damaging or stealing property. Importantly, social-cognitive factors (e.g., resilience and self-efficacy) and emotional regulation can “mediate” relationships between bullying and adverse psychological and health outcomes (Liu & Graves, 2011; National Academies of Science, Engineering, and Medicine, 2016, p.7).

National data on bullying among peers are often derived from self-report surveys of children and youth. Such data can be misleading and may contribute to underreporting of bullying as survey respondents may be reluctant to disclose such sensitive experiences.

Moreover, longitudinal data on bullying are typically part of large national surveys on youth risk behavior or crime in schools, with target populations of different ages or grades, varied sampling methods and inconsistent operational definitions of bullying (National Academies of Science, Engineering, and Medicine, 2016).

Data on bullying of children and youth with different chronic conditions, including endocrine disorders, are lacking. Relatively limited data suggest that obese children and adolescents are more often victims of bullying than their peers (van Geel, et al., 2014) and increased rates have been observed in samples of patients with diabetes (Storch, et al., 2004) as well as pubertal disorders (Dwyer et al., 2015).

Youth with endocrine disorders are at-risk for engaging in bullying because they may appear physically different from their peers. For instance, children and young adults with endocrine-related metabolic disorders maybe overweight or obese, placing them at risk for being bullied or bullying (Griffiths, et al., 2006; National Academies of Science, Engineering, and Medicine, 2016; Puhl & Latner, 2007). Other youth have endocrine conditions that cause problems with growth and development, which can have dramatic effects on their body image, self-esteem, peer relationships, and quality of life. This includes adolescents with growth hormone deficiency (Kao, et al., 2015), central precocious puberty (Choi & Kim, 2016), Turner syndrome (Carel, et al., 2005; 2006), Klinefelter syndrome (Close, et al.,

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2015; Herlihy, et al., 2011), and congenital disorders of sexual development (Bennecke, et al., 2017; Johannsen, et al., 2006). Additionally, transgender youth with gender nonconformity may present for endocrine consultations (Kirouac, 2016). These patients often have high psychosocial morbidity and are at risk for victimization, increased rates of depression, substance abuse, and suicide (Cicero & Wesp, 2017; Gordon, et al., 2017; Roberts, et al., 2013).

In addition to physical appearance, behavior that sets children and youth apart from peers can place them at-risk for bullying (Vessey, DeFazio, & Strout, 2013).

For example, children with type 1 diabetes mellitus may require regular visits to the school nurse’s office for blood glucose monitoring preceding or following meals and/or physical activity (e.g., physical education classes, or after school sports). Youth with type 1 diabetes need to restrict intake of certain types of high glycemic index foods and might need to take insulin injections or glucagon in response to signs and symptoms of high or low blood glucose levels. Thus, the possibility of a sudden onset of hypoglycemic episodes requiring urgent medical attention make these children and young adults stand out from their peers, thereby rendering them vulnerable to bullying (Storch, et al., 2004).

Pediatric endocrine nurses regularly encounter children and youth who are at increased risk for bullying. A diverse array of clinical, academic, policy, and communitybased stakeholders could benefit from the knowledge and expertise that pediatric endocrine nurses can offer to promote and maximize the physical, emotional, mental, and behavioral health of children with endocrine conditions.

Position As nurses with expert knowledge of the physical and psychosocial factors affecting the health and development of children and youth with endocrine disorders, PENS members should: 1. Encourage the use of evidence-based policies and practices to prevent, identify and respond to bullying in any context including (but not limited to) schools, neighborhoods, communities, online, and via social media; 2. Advocate for enhanced, innovative, and sustainable coordination between health and education professionals to prevent, identify, and respond to bullying using up-to-date evidence;

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3. Promote broad dissemination of psycho-educational programs that aim to lessen and remove the stigma of endocrine disorders that affect children and youth; 4. Support the development of empowerment-based programs to help individuals, peer groups, and communities respond to bullying and improve health and wellbeing; 5. Endorse calls for federal agencies to enhance national data collection on bullying among children and youth, including studies of bullying engagement of youth (including those with endocrine disorders); 6. Call for researchers to conduct well-designed studies examining the impact of bullying and victimization on psychological and health-related outcomes (including adherence to treatment and selfmanagement) for adolescents and young adults with endocrine conditions; 7. Advocate for interdisciplinary and inter-professional collaboration among national and state organizations spanning nursing, medicine, public health, education, psychology, juvenile justice, and other stakeholders to prevent, identify, and respond to bullying; 8. Endorse legislative and regulatory actions to protect children and youths from bullying; and 9. Support public and private sector initiatives that improve availability and access to affordable and appropriate mental health services children and youth affected by bullying, especially as it pertains to pediatric endocrine conditions.

Submitted by, Sally S. Cohen and Andrew Dwyer

References Bennecke, E., Thyen, U., Grüters A, Lux, A., & Köhler, B. (2017).

Health-related quality of life and psychological well-being in adults with differences/disorders of sex development.Clin Endocrinol (Oxf),86(4), 634-643 Carel, J.C., Ecosse, E., Bastie-Sigeac, I., Cabrol, S., Tauber, M., Léger, J., Nicolino, M., Brauner R., Chaussain, J.L., & Coste, J.(2005). Quality of life determinants in young women with turner’s syndrome after growth hormone treatment: results of the StaTur population-based cohort study. J Clin Endocrinol Metab, 90(4), 1992-1997.

Carel, J.C.,, Elie, C., Ecosse, E., Tauber, M., Léger, J., Cabrol, S., Nicolino, M., Brauner, R., Chaussain, J.L. & Coste, J. (2006).

Self-esteem and social adjustment in young women with

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Turner syndrome--influence of pubertal management and sexuality: population- based cohort study. J Clin Endocrinol Metab,91(8), 2972-2979.

Choi, M.S. & Kim, E.Y. (2016). Body image and depression in girls with idiopathic precocious puberty treated with gonadotropin-releasing hormone analogue. Ann Pediatr Endocrinol Metab, 21(3), 155-160.

Cicero, E.C. & Wesp, W.M. (2017). Supporting the health and well-being of transgender students. The Journal of School Nursing, 33 (2), 95-108.

Close, S., Fennoy, I., Smaldone, A,. & Reame N. (2015). Phenotype and adverse quality of life in boys with Klinefelter syndrome. J Pediatr, 167(3), 650-657.

Dwyer, A.A., Quinton, R., Pitteloud, N., & Morin D. (2015).

Psychosexual development in men with congenital hypogonadotropic hypogonadism on long-term treatment: a mixed methods study. Sex Med; 3(1), 32-41.

Gladden, R.M., Vivolo-Kantor, A.M., Hamburger, M.E., & Lumpkin, C.D. (2014). Bullying surveillance among youths: Uniform definitions for public health and recommended data elements, version 1.0. Retrieved from https://www.cdc.gov/ violenceprevention/pdf/bullying-definitions-final-a.pdf Gordon, A.R., Krieger, N., Okechukwu, C.A,, Haneuse, S., Samnaliev, M, Charlton, B.M., & Austin, S.B. (2017).

Decrements in health-related quality of life associated with gender nonconformity among U.S. adolescents and young adults. Qual Life Res, Mar 17. doi: 10.1007/s11136-017-1545-1

Moreno, M. (2016). Understanding cyberbullying: Developing an evidence-based definition. Retrieved from https://www.nij. gov/topics/crime/pages/understandingcyberbullying.aspx National Academies of Science, Engineering, and Medicine.

(2016). Preventing bullying through science, policy, and practice. Retrieved from http://www.nationalacademies.org/ hmd/Reports/2016/Preventing-Bullying-Through-SciencePolicy-and-Practice.aspx Puhl, R.M. & Latner, J.D. (2007). Stigma, obesity, and the health of the nation’s children. Psychol Bull, 133, 557–580..

Roberts, A.L., Rosario. M., Slopen, N., Calzo, J.P., & Austin, S.B. (2013). Childhood gender nonconformity, bullying victimization, and depressive symptoms across adolescence and early adulthood: an 11-year longitudinal study. J Am Acad Child Adolesc Psychiatry, 52(2),143-152.

Storch, E. A., Hedgerkin, A.D., Geffken, G. R., Lewin, A.B., Ohleyer, V., Freddo, M., & Silverstein, J.H. (2006). Bullying, regimen, self-management, and metabolic control in youth with type 1diabetes. Journal of Pediatrics, 148 (6), 784-787. van Geel, M., Vedder, P., & Tanilon, J. (2014). Are overweight and obese youths more often bullied by their peers? A meta-analysis on the correlation between weight status and bullying. Int J Obes (Lond)38(10), 263-267.

Vessey, J.A., DeFazio, R.L., & Strout, T.D. (2013). Youth bullying: a review of the science and call to action. Nursing Outlook, 61, (5), 337-345. doi: 10.1016/j.outlook.2013.04.011

Griffiths, L.J., Wolke,D., A S Page, A.S., Horwood, P., & the ALSPAC Study Team. (2006). Obesity and bullying: different effects for boys and girls. Arch Dis Child, 91, 121–125. doi: 10.1136/adc.2005.072314 Herlihy, A.S., McLachlan, R.I., Gillam, L., Cock, M.L, Collins, V., & Halliday, J.L. (2011). The psychosocial impact of Klinefelter syndrome and factors influencing quality of life. Genet Med, 13(7), 632-42.

Johannsen, T.H., Ripa, C.P., Mortensen, E.L., & Main, K.M. (2006). Quality of life in 70 women with disorders of sex development. Eur J Endocrinol, 155(6), 877-885.

Kann, L., McManus, M.S., Williams, A. H., et al. (2016).

Youth risk behavioral surveillance-- United States, (2015).

MMWR, 65(6),1-180. Retrieved from https://www.cdc.gov/ healthyyouth/data/yrbs/pdf/2015/ss6506_updated.pdf Kao, K.T., Stargatt, R., & Zacharin, M. (2015). Adult quality of life and psychosocial outcomes of childhood onset hypopituitarism. Horm Res Paediatr, 84(2), 94-101.

Kerouc, N. (2016). PENS position statement on transgender youth. Retrieved from PENS website.

Liu, J, & Graves, N. (2011). Childhood bullying: A review of constructs, concepts, and nursing implications. Public Health Nursing, 28, (6), 556-568. doi: 10.1111/j.1525-1446.2011.00972.x

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The MAGIC Foundation The MAGIC Foundation, founded in 1989, provides support and education to families of children with endocrine disorders and adult related disorders. Three mothers of affected children founded MAGIC due to the lack of information and support needed to go through the journey of Growth Hormone Deficiency (GHD).

MAGIC received a Congressional Resolution for the third week of September each year as “Growth Awareness Week”. Families, healthcare providers and many more help spread the message worldwide with banners and much more provided by MAGIC and downloadable from MAGIC’s web site.

As the foundation began to grow families of other disorders affecting growth in their children wanted the same support we were providing for GHD children. From these requests began the start of “Divisions” of MAGIC to provide the same support and education for those affected families. Today MAGIC has 11 Divisions for GHD, Adult GHD, RSS, SGA, CPP, CAH, ONH/SOD, Panpit, Cushings, MAS, and HPP.

MAGIC has recently expanded globally to help support families around the world that do not have the support groups or programs needed to keep them abreast of their child’s or adult disorder.

MAGIC provides a quarterly newsletter containing personal stories and other information on medical updates, foundation activities and more. Our “Friday Email” helps families remain up to date on current medical information regarding all our divisions giving families the opportunity to enjoy more time with their families while we search and provide new information and materials regarding their child’s specific disorder.

This service is free to any family interested in joining the Friday Email.

For more information contact MAGIC at: The MAGIC Foundation 4200 Cantera Drive, Suite 106 Warrenville, IL 60555 630-836-8200 fax 630-836-8181 800- 3 MAGIC 3 www.magicfoundation.org Mary Andrews

Each July in suburban Chicago MAGIC hosts our Annual Convention. This weekend educational program has over 30 medical professionals speaking, social activities for the families, professional daycare for younger children, a field trip for kids to free the parents during educational segments and major exhibitors from the pharmaceutical/ healthcare industry. This 3 day convention sees anywhere from 900-1100 attendees and educational segments are separated into specific disorders.

Division Consultants are available for each Division of MAGIC. This provides the opportunity for any family to relate directly with an affected family of the same disorder. Also, MAGIC provides “facebook” accounts for each Division whereby families have the opportunity to communicate with families of the same disorder worldwide. Currently MAGIC has over 30 facebook groups.

www.PENS.org

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Summer Edition  2017

Human Growth Foundation To All Our Friends at PENS, On behalf of myself, Dr. Pisit (Duke) Pitukcheewanont and the entire board of Human Growth Foundation we would like to congratulate you on your Thirtieth Anniversary and to “Thank You” for all you do.

Most of you are members of HGF or have participated in one of our many events. For those whom we have not yet had the pleasure of meeting I would like to introduce you to our foundation and the programs that we offer.

We are a Non-Profit organization located in New York.

HGF is in its 52nd year and our mission statement is: “The mission of HGF is to help children and adults with disorders related to growth or growth-hormone through education, research, support and advocacy”. Every year we host between eight and ten HGF Educational Day meetings and HGF Symposiums at PENS, ENDO, PES and ESPE. In the fall we organize an away meeting with credits for the Florida Endocrine Nurses. This year we will have hosted two Family Day Educational programs, one at Fort Worth Zoo and the other one at Sea World in Orlando.

Each year we have two walks to bring awareness about growth and growth disorders. One is in April in New York and the other one is in December in Los Angeles. On September 15th at the National Press Club in Washington D.C. HGF will be hosting our annual Gala where we will be honoring Doctor Peter A. Lee and Doctor Jan-Maarten Wit for their outstanding contributions in the field of Pediatric Endocrinology.

At the PENS meeting in 2016 we launched our “Say NO Bullying” program and since that time we have held two “Say NO Bullying” festivals.

Human Growth Foundation has literally been right at PENS side since its inception. In the earliest days when Leslie Niece and Sandy Dusso from Serono Symposia would register all the PENS attendees they would have Kim Frye (Past Executive Director) of HGF sitting there with them. Kim would provide the Nurses with our educational material to pass on to their patients. We since have been Exhibitors at the meeting, provided some of our board members to do a presentation at your meetings and hosted HGF Symposiums for all the attendees.

We have all witnessed a vast number of changes throughout these past thirty years. We have seen changes in delivery methods, dosing, healthcare, policies and so on. However the common denominator shared by both PENS and HGF is that any child who has a growth or growth hormone deficiency should be able to “Reach New Heights”.

HGF looks forward to working with PENS for the next thirty years.

Best regards,

Executive Director

We sponsor a Poster Award at PENS, PES and ESPE every year. HGF also provides seed money to young investigators through our “Small Grants Program”. When families call our office looking for information we have more than twenty booklets on various disorders that we are able to mail to them.

www.PENS.org

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Summer Edition  2017

International Pediatric Endocrine Nursing Summit September 13, 2017 ~ Washington, DC, USA Register at www.PENS.org

In conjunction with

You are Invited…

To Join Us!  Learn from inspiring speakers who are nurse experts in the treatment of pediatric endocrine disorders  Come together and network with pediatric endocrinology colleagues from all over the world  Celebrate the recipients of our poster awards

www.PENS.org

HIGHLIGHTS OF THE DAY Advancement of Pediatric Endocrinology Nursing over the Years Hyperinsulinism and Hyperglycemia Reshaping Pain Memories in Children Case Studies and Panel Discussions: Growth Patient with History of Malignancy Adrenal Insufficiency Prader Willi Syndrome in Infants Growth Hormone Insensitivity Multiple Endocrine Neoplasia (MEN) Central Precocious Puberty (CPP)

MORE DETAILS AVAILABLE AT PENS.ORG HOPE TO SEE YOU THERE!

Thank you to our Sponsors!

Platinum: Merck Serono, Novo Nordisk and Pfizer Silver: Endo Pharmaceuticals Bronze: Abbvie

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