Congenital Hyperinsulinism International

Family Conference Presentations

Below we have a collection of Family Conference Presentations dating from our past three years of Family Conferences, including a variety of topics that will provide additional information and resources:

 

Presentations from the 2016 Congenital Hyperinsulinism Family Conference in Philadelphia

(you can also see video presentations with the audio lectures from the Conference on this special videos page here)


Presentation on HI for parentsPartial Pancreatectomy for Focal Hyperinsulinism
A presentation by Dr. Adzick, who is the C. Everett Koop Professor of Pediatric Surgery at CHOP and the founder and director of the Hospital’s Center for Fetal Diagnosis and Treatment. Click on the image at left or click here for the PDF version of this presentation.


HI presentations at the Family ConferenceOur son Max: A Profile
A parent’s presentation outlining their experience with HI. Click on the image at left or click here for the PDF version of this presentation.


Dr. Indi Banerjee, Royal Manchester Children's Hospital UKTowards more tolerable therapy for CHI
A presentation by Indi Banerjee from the Royal Manchester Children’s Hospital in the UK. Click on the image at left or click here for the PDF version of this presentation.


Dr. Charles Stanley from CHOPHistory of HI in Pediatrics and Overview of Diagnostic/Therapeutic Algorithm
A presentation by Dr. Charles A. Stanley from the CHOP HI Center. Click on the image at left or click here for the PDF version of this presentation.


Report on Exendin drug for HIExendin-(9-39): Investigational Drug for the Treatment of Hyperinsulinism
A presentation by Diva D. De León-Crutchlow, MD, MSCE at CHOP. Click on the image at left or click here for the PDF version of this presentation.


Presentation on HI at Family ConferenceCurrent Medical Treatment Options for Hyperinsulinism
A presentation by Diva D. De León-Crutchlow, MD, MSCE at CHOP. Click on the image at left or click here for the PDF version of this presentation.


Presentation by Sian Ellard at Exeter Medical School Hyperinsulinism Genetics
A presentation by Sian Ellard, Consultant Clinical Scientist and Professor of Genomic Medicine at the University of Exeter Medical School. Click on the image at left or click here for the PDF version of this presentation.


Presentation at the Family Conference for CHIHI Global Registry
A presentation by Davelyn Eaves Hood, MD, MBA. Click on the image at left or click here for the PDF version of this presentation.


Presentation at CHI Family ConferenceRecent International Research and Investigative Projects
A presentation by Khalid Hussain, Department of Endocrinology Great Ormond Street Hospital for Children, Genetics and Epigenetics in Health and Disease; Genetics and Genomic Medicine Programme UCL Institute of Child Health, University College London UK. Click on the image at left or click here for the PDF version of this presentation.


2016 CHI Family Conference presentationCongenital Hyperinsulinism Feeding Audit Review by the Endocrine Service
A presentation by Khalid Hussain, Department of Endocrinology Great Ormond Street Hospital for Children, Genetics and Epigenetics in Health and Disease; Genetics and Genomic Medicine Programme UCL Institute of Child Health, University College London UK. Click on the image at left or click here for the PDF version of this presentation.


Report on Pet Scans for children with HI18 F-DOPA PET scan for Hyperinsulinism
A report by Lisa J. States, MD and Susan Becker, BSN, RN, CCRC from CHOP. Click on the image at left or click here for the PDF version of this presentation.


XOMA 358 for HyperinsulinismXOMA 358
A report on XOMA 358 by Paul Rubin, MD, Senior Vice President, Research and Development and Chief Medical Officer, XOMA. Click on the image at left or click here for the PDF version of this presentation.


Lecture given at CHI Family ConferenceAccess and Advocacy
A presentation about improving the lives of people born with congenital hyperinsulinism by Julie Raskin. Click on the image at left or click here for the PDF version of this presentation.


GDH Presentation at CHI Family Conference GDH-HI
A presentation by Indi Banerjee, Royal Manchester Children’s Hospital in the UK. Click on the image at left or click here for the PDF version of this presentation.


Family conference presentation on HI and FeedingHyperinsulinism and Feeding
A presentation by Sherri Shubin Cohen, MD, MPH, Medical Director, Pediatric Feeding and Swallowing Center, Program Director, Nutrition Fellowship, The Children’s Hospital of Philadelphia. Click on the image at left or click here for the PDF version of this presentation.


HI Family Conference presentationManaging Developmental Challenges in Infants and Toddlers with HI
A presentation by Lydia Rawlins M.Ed. OTR/L. Click on the image at left or click here for the PDF version of this presentation.


Family Conference presentation for CHIDevelopmental outcomes of HI: what to expect and what to do about it
A presentation by Amanda E. Bennett, MD, MPH, Developmental and Behavioral Pediatrics at The Children’s Hospital of Philadelphia. Click on the image at left or click here for the PDF version of this presentation.


Family Conference presentation for CHIDiazoxide-responsive Hyperinsulinism
A presentation by Linda Boyajian, CRNP, and Diva D. De León-Crutchlow, MD, MSCE, of the Congenital Hyperinsulinism Center. Click on the image at left or click here for the PDF version of this presentation.


Lecture on Growth Concerns for kids with HIGrowth Concerns for Children with Congenital Hyperinsulinism
A presentation by Adda Grimberg, MD, Scientific Director, Diagnostic & Research Growth Center, The Children’s Hospital of Philadelphia. Click on the image at left or click here for the PDF version of this presentation.


presentation on islet tranplantation for HIFuture Therapies in the Treatment of Diabetes: Islet Transplantation
A presentation by Michael R. Rickels, MD, MS, Associate Professor of Medicine, University of Pennsylvania Perelman School of Medicine, Medical Director, Pancreatic Islet Cell Transplant Program, Hospital of the University of Pennsylvania. Click on the image at left or click here for the PDF version of this presentation.


Family Conference presentation on living with HILiving with Hyperinsulinism as a Young Adult
A presentation by Katelyn Hart. Click on the image at left or click here for the PDF version of this presentation.


a lecture on nutrition for those with HINutrition with Sarah
A presentation on nutrition for those dealing with HI. Click on the image at left or click here for the PDF version of this presentation.


Family Conference presentation Managing Hyperinsulinism in School
A presentation by Dina Tallis and Kathleen Wegener. Click on the image at left or click here for the PDF version of this presentation.



Presentations from the 2015 Congenital Hyperinsulinism Family Conference in Barcelona


hi-in-school-15Managing Congenital Hyperinsulinism in School
A report by Dr. L. Salamanca Fresno, Pediatric Endocrinology, La Paz University Hospital, Madrid. Click on the image at left or click here for the PDF version of this presentation.


islet-biologyNew Insights into Islet Biology in Congenital Hyperinsulinism
A report by Central Manchester University Hospitals. Click on the image at left or click here for the PDF version of this presentation.


Congenital Hyperinsulinism
A report by Dr. Paula Casano Sancho, Pediatric Endocrinologist, Sant Joan de Déu-Barcelona. Click on the image at left or click here for the PDF version of this presentation or click here to read it in Spanish.


Using Old and New DNA Sequencing Technology to Identify the Genetic Causes of Hyperinsulinism
A report by Sian Ellard, Consultant Clinical Scientist and Professor of Genomic Medicine, University of Exeter Medical School. Click on the image at left or click here for the PDF version of this presentation.


HI Fund
A report on the HI Fund by Helen Milne. Click on the image at left or click here for the PDF version of this presentation.


Managing Hyperinsulinism in the Neonatal Period. Alejandro VargasManaging Hyperinsulinism in the Neonatal Period
A report on Vall d’Hebron Hospital’s Approach and Experience. Click on the image at left or click here for the PDF version of this presentation.


Davelyn Hood. HI Global Registry Barcelona PresentationHI Global Registry
Davelyn Eaves Hood, MD, MBA, who is the Board President of CHI, makes a presentation on the HI Global Registry. Click on the image at left or click here for the PDF version of this presentation.


Diva De Leon.  Exendin (9-39).  Investigational Drug for the Treatment of Congenital HyperinsulinismExendin-(9-39): Investigational Drug for the Treatment of Congenital Hyperinsulinism
A report by Diva D. De León-Crutchlow, Director, Congenital Hyperinsulinism Center. Click on the image at left or click here for the PDF version of this presentation.


Jessica Burton. Some of my storySome Of My Story
An autobiographical look at HI by Jessica Burton. Click on the image at left or click here for the PDF version of this presentation.


Joseph Bryan-The Historical Perspective.The Historical Perspective. How Basic Scientific Understanding has led to Improvements in Hyperinsulinism Treatment
A report by Joseph Bryan, Ph.D., and Lydia Aguilar-Bryan, MD, Ph.D., Pacific Northwest Diabetes Research Institute, Seattle, WA. Click on the image at left or click here for the PDF version of this presentation.


Klaus Mohnike. Xerisol Glucagon for Congenital HyperinsulinismXerisol Glucagon for Congenital Hyperinsulinism
A report by Xeris Pharmaceuticals. Click on the image at left or click here for the PDF version of this presentation.


Lindsey RigbyCongenital Hyperinsulinism: Information for the Public.
A report by Lindsey Rigby, Specialist Practitioner in Congenital Hyperinsulinism, Royal Manchester Children’s Hospital, Northern Congenital Hyperinsulinism Service, UK. Click on the image at left or click here for the PDF version of this presentation.


Maria Paz.  South America Congenital Hyperinsulinism ConferenceSouth America Congenital Hyperinsulinism Conference
A personal story from South America. Click on the image at left or click here for the PDF version of this presentation.


Paul Thornton.  Guidelines for Diagnosing and Treating Hypoglycemia in InfantsGuidelines for Diagnosing and Treating Hypoglycemia in Infants
A report by Paul S. Thornton from Cook Children’s Pediatric Health Care in Texas. Click on the image at left or click here for the PDF version of this presentation.


Ulrike Seyfarth and Andrea Teti. Project PEAK.  Participation and Empowerment of Kids with Congenital HyperinsulinismProject PEAK: Participation and Empowerment of Kids with Congenital Hyperinsulinism
A report by Ulrike Seyfarth and Andrea Teti. Click on the image at left or click here for the PDF version of this presentation.


Adrienne Burton.  Letting GoLetting Go Is Not Easy
A report on the stages of letting go by Adrienne Burton. Click on the image at left or click here for the PDF version of this presentation.


Adrienne Burton.Devices.  What's New and What Works. Part 1Devices: What’s New and What Works
A report on new devices by Adrienne Burton. Click on the image at left or click here for the PDF version of this presentation.


Devices.  What's New and What WorksWhat’s New and What Works: Glucometers, CGMs, and Insulin Pumps
A report by Carmen Yoldi, RN, Diabetes Therapeutic Education, Endocrinology Unit, Sant Joan de Déu-Barcelona. Click on the image at left or click here for the PDF version of this presentation.


Coping Strategies for Managing the Stress of Caring for Children with Complex Medical NeedsCoping Strategies for Managing the Stress of Caring for Children with Complex Medical Needs
A report by Raquel Cecilia Costa, Psychiatrist. Click on the image at left or click here for the PDF version of this presentation.


How Basic Scientific Understanding has led to Improvements in Hyperinsulinism TreatmentHistorical Perspective: How Basic Scientific Understanding has led to Improvements in Hyperinsulinism Treatment
A report by Charles A. Stanley, MD, Hyperinsulinism Center, Children’s Hospital of Philadelphia. Click on the image at left or click here for the PDF version of this presentation.


Tools for Diagnosing HyperinsulinismTools for Diagnosing Hyperinsulinism
A report by Klaus Mohnike and Jean-Baptiste Arnoux. Click on the image at left or click here for the PDF version of this presentation.


 

Presentations from the 6th Congenital Hyperinsulinism Family Conference, August, 2014


presentation on nutrition for hyperinsulinism Nutrition with Sarah Barnes
Sarah Barnes presented on dealing with nutrition in relation to hyperinsulinism, including talking points on picky eating, the Glycemic Index, and exercising with diabetes. Click on the image at left or click here for the PDF version of her presentation.

 

Developmental outcomes of hyperinsulinismDevelopmental outcomes of HI: what to expect and what to do about it
Amanda E. Bennett, MD, MPH, is a Developmental Behavioral Pediatrician at The Children’s Hospital of Philadelphia, gave a presentation on developmental outcomes of hyperinsulinism and what to expect and what do do about it. Click on the image at left or click here for the PDF version of her presentation.

 

CHI presentation on diazoxide responsiveDiazoxide Responsive Congenital Hyperinsulinism
Linda Boyajian, RN, MSN, CRNP, from the Congenital Hyperinsulinism Center at The Children’s Hospital of Philadelphia gave a presentation on hyperinsulinism and the use of Diazoxide as a medication helpful in treatment. Click on the image at left or click here for the PDF version of her presentation.

 

CSI glucagon for treatment of hypoglycemiaCSI Glucagon for treatment of severe, persistent hypoglycemia
Xeris Pharmaceuticals gave a presenation on the use of CSI (Continuous Subcutaneous Infusion) Glucagon for treatment of severe hypoglycemia. Click on the image at left or click here for the PDF version of this presentation.

 

insulin pump management for hyperinsulinismInsulin Pump Management and Continuous Glucose Monitoring Systems
Faith Daily, RN, BSN, CDE, CPT is a Certified Diabetes Educator and Insulin Pump Trainer who gave a presentation on Insulin Pump Management and Continuous Glucose Monitoring Systems. Click on the image at left or click here for the PDF version of this presentation.

 

Developmental and Medical Outcomes for hyperinsulinismDevelopmental and Medical Outcomes
Diva D. De León-Crutchlow, MD, MSCE is the Director of the Congenital Hyperinsulinism Center at The Children’s Hospital of Philadelphia. This presentation covered neurodevelopmental outcomes for children with hyperinsulinism. Click on the image at left or click here for the PDF version of this presentation.

 

treatment options for hyperinsulinismDevelopmental and Medical Outcomes
Diva D. De León-Crutchlow, MD, MSCE is the Director of the Congenital Hyperinsulinism Center at The Children’s Hospital of Philadelphia. This presentation covered current medical therapies and goals of therapies, both immediate, mid-term, and long-term goals. Click on the image at left or click here for the PDF version of this presentation.

 

hyperinsulinism and the health insurance processNavigating the Health Insurance Process
Julie Raskin of Congenital Hyperinsulinism International and Teresa Grace of The Children’s Hospital of Philadelphia offered a presentation on knowing your resources and working with plan limitations in the health insurance process. Click on the image at left or click here for the PDF version of this presentation.

 

Hyperinsulinism and Diabetes, high blood sugarHyperinsulinism and Diabetes: When blood sugar is high
Melissa Andrews Rearson, MSN/CRNP, is a Pediatric Nurse Practioner and gave a presentation on correcting blood sugars. Click on the image at left or click here for the PDF version of this presentation.

 

history of hyperinsulinismHistory of Congenital Hyperinsulinism: Treatment and Research
This presentation on the history of congenital hyperinsulinism was given by Charles A. Stanley, MD, from the Endocrinology Division of The Children’s Hospital of Philadelphia. Click on the image at left or click here for the PDF version of this presentation.

 

managing hyperinsulinism at schoolPut Your Plan into Action: Managing hyperinsulinism in school
Dina Tallis provides advice on managing hyperinsulinism at school, including various choices and scenarios that one must consider for the child at school. Click on the image at left or click here for the PDF version of this presentation.

Presentations from Segrate, 2013:


a presentation on devicesHyperinsulinism Devices
Adrienne Burton offers her presentation on devices, including pumps, CGM, G tube, Glucometers, and Closed Loop. Click on the image at left or here for the English version PDF, or click here to read it in French.

 

a presentation on preparations for schoolsPreparing Your Child For School
Adrienne Burton offers her presentation on preparing your children for school, including suggested forms, emergency plans, and more. Click on the image at left or here for the English version PDF, or click here to read it in French.

 

a presentation on the Children's Hyperinsulinism FundThe Children’s Hyperinsulinism Fund
Adrienne Burton offers her presentation on the history of The Children’s Hyperinsulinism Fund. Click on the image at left or click here for the PDF.

 

Hyperinsulinism clinical audit reportCongenital Hyperinsulinism Feeding Audit
Clare Gilbert presents an audit that looks at patient feeding issues, parental concerns, and interventions required from the Speech and Language Department as well as the Dietetics Department. Click on the image at left or here for the English version PDF, or click here to read it in French.

 

GastrostomyWhat is a Gastrostomy?
Clare Gilbert gives a presentation explaining the process of a Gastrostomy. Click on the image at left or here for the English version PDF, or click here to read it in French.

 

Managing Hyperinsulinism in schoolManaging Hyperinsulinism in School
Clare Gilbert gives a presentation explaining how parents can better explain hyperinsulinism to schools. Click on the image at left or here for the English version PDF, or click here to read it in French.

 

PET scansPET scans in practice at GOSH
Clare Gilbert gives a presentation detailing a PET scan at GOSH (Great Ormond Street Hospital in London). Click on the image at left or here for the English version PDF, or click here to read it in French.

 

PET scansCoping Strategies for managing a child with complex medical needs.
Irene Promussas, PhD, gives her presentation providing strategies for managing a child with complex medical needs, based on her own experience with her daughter. Click on the image at left or here for the English version PDF, or click here to read it in French.

 

Lobby For KidsThe Patient’s Voice: Children’s empowerment
Irene Promusussas, PhD, gives a presentation on the organization Lobby4kids. Click on the image at left or here for the English version PDF, or click here to read it in French.

 

Feeding issuesFeeding Issues: An experienced parent’s perspective, 15 years later.

 

Isabel Calderon presents her experience with feeding issues and the step-by-step impacts of HI on feeding. Click on the image at left or here for the English version PDF, or click here to read it in French.

 

Click here for a short 2 minute video which illustrates page 2 of the PDF, which is titled “You can imagine a week …” with a glance at her own feeding issues with her daughter at age 5.

 

A Patient's VoiceAbout Congenital Hyperinsulinism International
Isabel Calderon gives a presentation on how CHI is working to improve the lives of children, adults, and families living with congenital hyperinsulinism around the world. Click on the image at left or click here for the PDF.

 

A Patient's VoiceThe Genetics of CHI: For Parents
Khalid Hussain gives a presentation on the genetics of congenital hyperinsulinism, with information for parents. Click on the image at left or here for the English version PDF, or click here to read it in French.

 

Case Studies of children with CHICase studies of children with congenital hyperinsulinism
Klaus Mohnike gives a presentation on case studies of children with congenital hyperinsulinism. Click on the image at left or click here for the PDF.

 

Psychological profiles of people with congenital hyperinsulinismStandardized physchological investigation of 59 patients with congenital hyperinsulinism (English version)
Klaus Mohnike gives a presentation on standardized physchological investigation of 59 patients with congenital hyperinsulinism. Click on the image at left or here for the English version of the PDF, or click here to read it in German.

 

Fish Oil TrialA Pilot Trial with MaxEPA
Louise Caine presents a pilot trial with MaxEPA; Glycaemic Control in Diazoxide-Treated Children with CHI using supplementary Omega-3-Polyunsaturated Fatty Acids. Click on the image at left or here for the English version PDF, click here to read it in French.

 

Feeding problems for children with CHIFeeding Problems in CHI
Oliver Blankenstein gives a presentation on feeding problems for children with CHI: mechanisms, facts, and treatments. Click on the image at left or click here for the English version PDF, or click here to read it in French.

 

long term treatment with Lanreotide in CHILong-term Treatment with Lanreotide in CHI
Oliver Blankenstein gives a presentation on long-term treatment with Lanreotide in CHI. Click on the image at left or click here for the English version PDF, or click here to read it in French.

 

PET scan practicePET Scan in Practice for CHI
Oliver Blankenstein gives a presentation on PET scan in practice for CHI: basics, strengths and weaknesses. Click on the image at left or click here for the English version PDF, or click here to read it in French.

 

The History of HIThe History of Congenital Hyperinsulinism (English)
Paul S. Thornton, MD, gives a presentation on the History of Congenital Hyperinsulinism. Click on the image at left or click here for the English version of the PDF. Click here to read it in French. Click here to read it in German. Click here to read it in Italian. Click here to read it in Spanish.

 

Remission in non-operated patientsRemission in Non-operated Patients with Diffuse Disease and Long-term Conservative Treatment (English)
PD Dr. Thomas Meissner gives a presentation on remission in non-operated patients with diffuse disease and long-term conservative treatment. Click on the image at left or click here for the English version of the PDF, or click here to read it in German.

 

Xoma XMetDXOMA mAb Discovery: XMet Program
Wil Chow gives a presentation on XOMA’s work on their XMet Program, which uncovered three apparently novel classes of insulin receptor allosteric binders. Click on the image at left or click here for the PDF.

 

Surgery for HI - less may be moreSurgery in Congenital Hyperinsulinism – less may be more
Winfried Barthlen gives a presentation on surgery for congenital hyperinsulinism with the argument that less may be more. Click on the image at left or click here for the PDF.

Presentations from Philadelphia, 2012:


a presentation on Pancreatic InsufficiencyTopic: Pancreatic Insufficiency and G-tube Care
Dr. Asim Maqbool, Attending Physician in the Gastroenterology at CHOP shared information about potential pancreatic insufficiency and g-tube care. Click on the image at left or click here for the PDF.

 

Hyperinsulinism Around The WorldHyperinsulinism Around the World: Australia
Dr. Louise Conwell and Dr. Ristan Greer, on behalf of Congenital Hyperinsulinism Group, Brisbane, present their efforts on behalf of Children’s Health Services and Queensland Health. Click on the image at left or click here for the PDF.

 

Efforts in Manchester to work with CHIThe Manchester Experience
Lindsey Rigby, a Clinical Nurse Specialist who specializes in congenital hyperinsulinism at the Royal Manchester Children’s Hospital, presents their work on treatment and education for HI in Manchester. Click on the image at left or click here for the PDF.

 

A presentation for CHI on transition to adulthoodTransition to Adulthood
Symme Trachtenberg, MSW, LSW, Director, and Community Education from The Children’s Hospital of Philadelphia presents this discussion regarding skills for transition, resources, and programs for those who are entering adulthood with congenital hyperinsulinism. Click on the image at left or click here for the PDF.

 

Presentation given by Paul Thornton, Medical DirectorCook Children’s HI Center
Paul Thornton, the Medical Director of the Cook Children’s Hyperinsulinism Center, gives an introduction to the HI Center. Click on the image at left or click here for the PDF.

 

Partial Pancreatectomy for Focal HyperinsulinismSurgery for congenital hyperinsulinism at CHOP
Dr. Scott Adzick, attending Physician at CHOP who has performed hundreds of pancreatectomies on HI patients at CHOP shared information about the surgical approach at CHOP. Click on the image at left or click here for the PDF.

 

Hyperinsulinism and Child DevelopmentHyperinsulinism and Child Development
Rosemary Eikov and Megan Ott, nurse practitioners in the CHOP Child Development Center, have written together on the subject of Hyperinsulinism and Child Development. Click on the image at left or click here for the PDF.

 

Managing Hyperinsulinism in SchoolPut Your Plan Into Action: Managing Hyperinsulinism in School
Dina Tallis is a volunteer education specialist who is also a mother of a girl with HI. In addition to being a mother, she is the principal of a primary school in Michigan. She understands the needs of children with HI from the inside out. Click on the image at left or click here for the PDF.

 

The Role of Patient Organizations in AdvocacyThe Role of Patient Organizations in Advocacy
Mary Dunkle, Vice President of NORD (The National Organization for Rare Disorders), presented on how families dealing with a rare chronic illness can work with patient organizations to advocate on behalf of people living with the condition. Click on the image at left or click here for the PDF.

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