CHI Blog

CHI is presenting a series of blog articles on the speakers who will be addressing families attending the Fourth Congenital Hyperinsulinism Family Conference March 17 and 18, 2012, in Philadelphia, PA.  In this article, we present Melissa Rearson, Nurse Practitioner.

Melissa Rearson has been working at CHOP with diabetes and congenital hyperinsulinism (HI) patients since 1989.  I first met her in 1996 when my son, a newborn at the time, was transferred to the “Endocrine floor” at CHOP.  Ms. Rearson completed a master’s degree and started seeing patients at CHOP in the Division Endocrinology/Diabetes in 1993.

Ms. Rearson will be speaking at the Family Conference on diabetes secondary to HI and she will also be leading a session with the pre-teen and teen group at the Conference.   Ms. Rearson is a fantastic resource because she has an excellent understanding of blood sugar issues from a medical standpoint and is equally well-versed in day-to- day home management of hypo- and hyperglycemia.  

In her own words:

“I was initially fascinated by the endocrine specialty because I saw that there is lots of room for family support and education—all things done well by nurses!   I mainly work with patients in our division with type 1, autoimmune, diabetes, but that has changed over the years as we were able to have more and more nurse practitioners who specialized in various parts of our practice.  When I initially started in the division, I worked on the floor with all of the endocrine patients—including the congenital hyperinsulinism patients.

Now, nurse practitioners in our division have a group of families that we follow at each outpatient visit.  Nurse practitioners work to educate, evaluate health and chronic condition management, support family members with maintaining health at home, refer to various other specialists and act as a liaison for the family among the endocrine team at CHOP.

I am committed to helping kids and families manage diabetes to the best of their ability with the technology that exists. This means that I delve into what ‘real life’ looks like for each family and work with the various members to find a program that will work for the family as a whole. Managing diabetes takes energy, enthusiasm, diligence, patience, problem-solving and coping skills—and often cheerleading! I hope to provide help in all of these areas for each family in a way allows them to do their best with a sometimes overwhelming chronic condition.”

CHI is presenting a series of blog articles on the speakers who will be addressing families attending the Fourth Congenital Hyperinsulinism Family Conference March 17 and 18, 2012, in Philadelphia, PA. In this article, we present Dr. Pascale de Lonlay.

Dr. Pascale de Lonlay is now a veteran of the Congenital Hyperinsulinism Family Conferences. I first met her in 2006 at our second Philadelphia conference. She is a wonderful speaker, very compassionate and articulate, and she is a preeminent pediatric endocrinologist.

Dr. de Lonlay is responsible for some of the major advances in in the understanding of congenital hyperinsulinism. She and her associates at the Necker-Enfants Malades Hospital (a leading children’s hospital in Paris) have done excellent work identifying babies with focal lesions. They have found that about half of the patients who require surgery have potentially curable focal lesions.

Dr. de Lonlay has been a leader in developing a team approach to the diagnosis and treatment of these infants, using interventional radiologic procedures and intra-operative histology, to identify and cure those with focal disease.

Dr. de Lonlay, along with her colleagues, has also successfully treated patients with long-acting octreotide. She will speak at the conference about how this long-acting octreotide has improved the quality of life for many of her patients.

Dr. Khalid Hussain
Written by Julie Raskin

CHI is publishing a series of blog articles on the speakers who will be addressing families attending the Fourth Congenital Hyperinsulinism Family Conference March 17 and 18, 2012, in Philadelphia, PA. In this article, we present Dr. Khalid Hussain.

I first met Dr. Khalid Hussain in June of 2003 at the First Congenital Hyperinsulinism Family Conference held in Philadelphia. When I heard that he was coming I was amazed that Dr. Hussain would travel all the way from London to speak at a conference for families dealing with congenital hyperinsulinism (HI). Upon meeting Dr. Hussain, it all became very clear. This is a man who has dedicated his life to HI families. He is a kind, gentle, and caring person who has lived a life in service to patients with HI. He is also a world renowned researcher.

Dr. Hussain trained in London, England and Melbourne, Australia in the areas of neonatology, endocrinology, and metabolism. His clinical and research focus has always been on understanding the genetic basis of hypoglycemia. He leads the HI service at Great Ormond Street Hospital in London. Patients are referred to his practice from all over the world.

“I am fascinated by the mechanisms that lead to HI. Managing patients with HI is a real challenge and I gain a lot of satisfaction when we have sorted out all the medical issues and the patient is able to go home.”

In addition to being such an outstanding doctor, Dr. Hussain understands the importance of building strong patient organizations. He always makes himself available for consultation on any Congenital Hyperinsulinism International (CHI) project. He has come to all 5 international programs that CHI has offered. He has also worked very closely with the Children’s Hyperinsulinism Fund in the UK, which has been extremely successful at raising funds for HI research and advocating for HI patients.

Presenting Dina Tallis
Written by Julie Raskin and Dina Tallis

CHI is offering a series of blog articles on the speakers who will be addressing families attending the Fourth Congenital Hyperinsulinism Family Conference March 17 and 18, 2012, in Philadelphia, PA. In our second article, we present Ms. Dina Tallis.

Dina Tallis is one of those people who manages to do it all. She has been an incredibly dedicated mother to her daughter Ashlee who has congenital hyperinsulinism (the HIHA type) while continuing to pursue a career in elementary education. Now with the dual credential, mother of a child with congenital hyperinsulinism (HI) and principal of an elementary school in Michigan, Dina is the ideal person to speak to parents about managing HI at school at the Fourth Congenital Hyperinsulinism Family Conference which will be held on March 17th and 18th at the Children’s Hospital of Philadelphia.

I have been lucky enough to know Dina for a good long time. We met many years ago, first virtually on the Yahoo Hyperins board (a great place to connect with other HI families even in the Facebook era), and then at the 2006 Congenital Hyperinsulinism Family Conference, also in Philadelphia. I hope you all have a chance to meet her at the upcoming conference and to participate in her session. She understands school issues from all vantage points and can help parents navigate school systems successfully.

Dina graduated from the University of Michigan with a degree in elementary education with a focus on early childhood development. Upon completion of her degree, she obtained a teaching position, while pregnant with Ashlee at the very same time.

And now in Dina’s own words: When Ashlee was about 6 months old I started back to school to get my Master’s in the Art of Teaching. Four months after starting the program, Ashlee had her first seizure. Luckily, the school where I worked was very supportive as it took nearly 10 months to get Ashlee properly diagnosed with HIHA and on Diazoxide. As we attempted to resume a normal routine again I finished up my Master’s in the Art of Teaching and settled into my teaching career.

After several more years my itch for education returned and I completed my Master’s in the Art of Education in Curriculum and Instruction. During this period Ashlee was relatively stable with her HIHA. We experienced a lot of bumps along the way but most of those bumps were due to the severity of her HIHA and the need to increase her meds each time she had a major growth spurt. I eventually went back to school to pursue my career path of an elementary principal. After finishing my Education Specialist degree in Education Administration, the school district where I had been teaching for eleven years offered me a principal’s position. I am currently employed with that same school.

The most interesting part of my education was learning about all the regulations and rules pertaining to special education and medical plans. Obviously, this information sparked my interest as for nine years we’d been dealing with having a child in in the public school system with medical needs. Being able to see education from the perspective of a classroom teacher, a building principal, and most importantly, a mother, has enabled me to not only ensure Ashlee’s medical needs are taken care of, but that other children who have medical needs are safe and healthy when they are in my care. In a society where education cuts are dictating important aspects of education, such as nurse availability, the idea situation is not always available. However, understanding your rights as well as the limitations schools are dealing with are important as we attempt to provide our children with an education, away from home, and feel comfortable and confident that they are getting the best possible care.

Presenting Dr. Charles Stanley
Written by Julie Raskin

CHI is introducing a series of blog articles on the speakers who will be addressing families attending the Fourth Congenital Hyperinsulinism Family Conference March 17 and 18, 2012, in Philadelphia, PA. In our first article, we present Dr. Charles Stanley of the Children’s Hospital of Philadelphia (CHOP).

Dr. Charles Stanley is a powerhouse in the field of pediatric endocrinology with a specialization in congenital hyperinsulinism (HI). He has had a remarkable career as a professor, researcher, clinician and administrator. He has authored many papers and been at the forefront of congenital hyperinsulinism research for his entire career. After graduating from Harvard University as an undergraduate and the University of Virginia Medical School, Dr. Stanley moved on to CHOP for his post-doc training. He has been there ever since and is one of the reasons CHOP is such a leading institution and a world class center for treatment and research in the HI field. While Dr. Stanley has been at CHOP for his entire medical career, he has had the opportunity to collaborate with people from many institutions all over the world on HI research. He considers the collaborative nature of this work to be a key factor in the gains in knowledge and improvements in outcomes.

Dr. Stanley has had a longstanding interest in glucose metabolism beginning in his later teenage years. His work through the decades has consistently been groundbreaking. His mentor in the field was Lester Baker, another CHOP researcher and clinician who had been working on “idiopathic hypoglycemia, treating it with diazoxide.” Dr. Stanley “tumbled to the fact that these kids actually had hyperinsulinism.” Together with Dr. Lester Baker, Dr. Stanley came up with an excellent method for diagnosing HI and this was paired with a strategy for drug and surgical treatment. They also studied “other forms of hypoglycemia and stumbled onto new genetic disorders of fatty acid oxidation,” which, in turn, helped them to find the genetic basis of hyperinsulinism, just at a time technologies for genetic mutation analysis became available.

Charles Stanley had the great fortune to collaborate with Drs. “Paul Thornton , Ben Glaser and Alan Permutt on the discovery of SUR1 and Kir6.2 mutations as the first of the hyperinsulinism genes.” Dr. Stanley is very encouraged by the work that has taken place in the field over the last few decades and in recent years. Dr. Stanley is also very excited by new directions in treatment and research. He notes in particular Dr. “Diva DeLeon’s work on GLP1 antagonists as a potential alternative to surgery and the work at CHOP with surgeon, Dr. Scott Adzick and his use of PET scans for locating and curing focal HI.” In addition to the colleagues mentioned above, Dr. Stanley is very impressed by the work of Drs. Khalid Hussain, Pascale de Lonlay, Timo Otonkoski, and Lydia Aguilar-Bryan, in addition to many others.

Dr. Stanley has also been a wonderful mentor and supporter of Congenital Hyperinsulinism International (CHI). He has been instrumental in helping HI families develop our strong voice, advocating and supporting improved care for our children with HI. I have known Charles Stanley for 15 years. In addition to being a brilliant researcher and clinician, he is a delightful person. Kind and true are the first adjectives that come to mind to describe him. Our work together, Stanley notes is a good thing and “there is lots to do ahead.” He continues: “I’m gratified to have been able to lend a hand. One of our nurses, Linda Steinkrauss, used to show pictures of our kids with HI and say, ‘These are my 10 favorite reasons for coming to work each day’. I couldn’t agree more.”