Congenital Hyperinsulinism International (CHI) is delighted to share the news that last Sunday evening, President of the Board of Directors, Dr. Davelyn Hood, and Secretary of the Board of Directors, Pam Williams, were both elected to a second two year term. CHI is so lucky that these two talented and committed board members are serving as volunteers in these important capacities.
Davelyn Hood, MD, lives in San Antonio, Texas with her husband and 3 boys. Davelyn has a rare set of unique qualifications for this position including being a hyperinsulinism (HI) parent and a physician. 
Davelyn knows HI firsthand because her son was born with the condition 15 years ago. Davelyn was so grateful to have found the Yahoo group at that time and quickly started connecting with other HI families who have become lifelong friends. Davelyn knows firsthand the importance of online support and she has benefited from it all these years and is now able to give back and provide support to newly diagnosed parents in the CHI Facebook Forum group. She understands how CHI serves first and foremost as a lifeline to families impacted by HI.
Davelyn has also become very involved in CHI’s international work. She moderated the 2014 CHI conference in Dublin last year and presented at this year’s CHI conference in Barcelona. She has gotten to know HI patient advocacy leaders in many countries and is excited about the international collaboration talking place. In her time as President she has worked diligently to foster a positive, international presence that respects the autonomy of the individual country specific HI groups, while fostering CHI’s HI work and international collaboration. With deep involvement from Davelyn, CHI is working on major collaborative efforts in South America, with the help of our partners around the globe, to ensure better access to HI treatment and knowledgable HI providers.
Davelyn also interacts with individuals at biotech companies doing research relevant to HI, and has excellent relationships with HI researchers throughout the world that serve as part of the CHI Scientific Advisory Group. Her background as a physician and an HI mom provide her with an understanding of HI and an ability to communicate on CHI’s behalf in ways that are particularly effective.
In addition to being an HI mom and a physician, Davelyn brings additional experience and talents to her role as President. One of the first orders of business she undertook in her initial term was to work closely with me, CHI’s executive director, to apply business acumen learned from her MBA education and nearly ten years of executive level work experience.
Davelyn is also the Chair of the Steering Committee working on the HI Global Registry development work. Davelyn is excellent in that role because of the large-scale health data projects she has designed and led. The registry will afford CHI the ability to work alongside international patient advocates and HI researchers with global patient data to search for better treatments and one day, a cure.
Since becoming President, Davelyn has also been a diligent and successful fundraiser. She chaired the Sugar Shindig Committee and has been on the Sugar Soiree Committees for two consecutive years. This year she really challenged herself and was the very successful Live Auctioneer at the Sugar Soiree at Carolands Chateau in Hillsborough, CA.
Pam Williams, CHI Secretary, resides on Long Island in New York and has been a dedicated member of the CHI community since its inception. Pam has attended most of CHI’s meetings and conferences in the capacity of panelist as well as participant. 
As a panelist at the 2010 conference in San Diego, Pam shared her experiences parenting a child with HI with humor and insight. Pam is also a CHI Patient Champion, making herself available to talk to HI parents in need of support. Pam’s son, John, was born in 1989 and had pancreatic surgery at CHOP in 1991. He became diabetic in 2007, and that same year he went away to college. He graduated from Quinnipiac University in CT in 2011. Pam and I sat down for an interview and this is what Pam has shared:
What are some of the important lessons you have learned through parenting a child with HI?
Our family spent a lot of time in hospitals and doctors’ offices in the early years of our son’s life. We had the opportunity to meet other families of children with health issues and special needs. We became friends with people from around the country we would never have met, and gained perspective and patience and appreciation through our experiences. We also learned to ask a lot of questions!
What were some of the greatest difficulties you experienced raising a child with HI?
Because our son was born about a quarter of a century ago, ANXIETY was the biggest difficulty! So little was known about HI at the time that our son really was a “guinea pig!” Even the doctors at CHOP had limited knowledge of the disease at that time, and didn’t realize there were different kinds of HI. We used experimental drugs and didn’t know if they would work or what the side effects would be. We researched as much as we could but there was not much information available. WE knew more about hyperinsulinism than our pediatrician who had been a doctor for over 40 years. THAT was scary!
What are some of the positive ways in which parenting a child with HI has affected your
family life?
We have a very close bond with our son, perhaps due in part to the fact that he needed so much care as a youngster. The extra concern and attention he required brought us all together, and both he and his older sister are compassionate, empathetic and nurturing. I like to think they would have grown up that way anyway, but I believe these personality traits were influenced and enhanced by our unusual situation.
What words of wisdom do you have for parents of newly diagnosed children?
Your baby is born at a great time! The doctors know so much more about this condition than they did 25 years ago. This new knowledge, new protocol and the sharing of information from research being done around the world mean better treatment and better outcomes for the new patients. The realization that there are different types of HI, and the new testing that is available, make it possible for some of the patients (those with focal lesions) to be CURED! Plus there is a large and wonderful support group available to you, so you are not alone in this!
What areas of work are most important for CHI to concentrate on, in your opinion?
The two main areas are dissemination of information to families (especially though the conferences!) and the financial support of doctors willing to work on this rare condition. Getting information to the families of patients through emails and enabling attendance (and participation) at the medical meetings and conferences is so valuable!
The HI research taking place at academic institutions sounds very promising! If CHI is able to help support resthis earch and treatment through fundraising efforts, that is really important as well.
What kind of supports do you think would be helpful to parents of newly diagnosed children?
Just knowing there are other families out there struggling with the same types of issues and concerns, and knowing they are willing to listen to you and give advice and support is a wonderful thing. Two decades ago there wasn’t a support group or a place to go to share experiences or ask questions or get advice. The fact that we, as HI families, have been through it with our own kids and attended conferences and gathered information about the latest developments and treatments makes the community of CHI a great resource!
What do you hope HI treatment will look like in 20 years?
Perhaps there will be a continuous infusion pump with a blood sugar feedback system, similar to the insulin pumps diabetics use today. Back in the early 1990s we fed John every two to three hours during the night. If there could be a completely reliable way of controlling hypoglycemia throughout the night, parents wouldn’t have to worry about their children fasting and going low, and everyone could get a good night’s sleep!!
Both Davelyn and Pam are collaborative team players with a strong vision for CHI’s future. They both have the proven leadership skills to turn ideas into action. They are both very receptive to the ideas of others and responsive to all key stakeholders in the HI community.
