12 Acquisition International - Non-Profit Organisation Awards 2023 May23288 Most Pioneering Hypoglycemia Patient Organization 2023 Founded in 2020, Ketotic Hypoglycemia International (KHI) is a worldwide organization for families affected by Idiopathic Ketotic Hypoglycemia, aiming to enhance understanding of the disorder for the benefit of the children, parents, and families affected by it. Here, we take a look at the work the organization has done and how it continues to help families across the world. Hypoglycemia occurs when the glycogen stores are depleted, the body will switch to burn fat deposits. The fat burn lead to two fuels for the brain, both glucose and ketone bodies. However, ketones in the blood will lead to nausea and eventually vomiting. This will lead to a vicious circle, where you cannot eat or drink sugar-rich items, which again leads to further fat burn and production of ketone bodies. n a KH-patient, the glycogen stores are somehow insufficient. This leads to decreased fasting tolerance with earlier onset of fat burn and hence ketone bodies. In most patients, the hypoglycemia is relatively mild, and the ketone bodies helps to provide fuel to the brain, which prevents loss of consciousness and convulsions. However, in relatively few patients, the condition is more severe, but still without an identified cause despite intense investigations in hormones and cell metabolism. Such patients are said having “idiopathic” KH, or IKH, which simply means KH without any known cause. When Danielle Drachmann and her children were diagnosed with pathological idiopathic ketotic hypoglycemia, she was inspired to found Ketotic Hypoglycemia International (KHI) to raise awareness about the condition and support families who were in a similar position. Danielle was support by Dr Henrik T, Christesen and Dr Jacob Sten Petersen in founding and running KHI and navigating the new medical advocacy world she found herself in. Dr Jacob Sten Petersen continues to be a supporter of the work of KHI and is currently the chairman of the board. Danielle had no background knowledge of ketotic hypoglycemia and no previous experience in the medical field, which meant that she had to learn a whole new language of medical terminology and formalities. This was a huge challenge for her, which she faced alongside raising her children, but she was determined to accomplish it. Danielle has now co-authored research papers, won patient advocacy awards, and worked hard to grow KHI into what it is today. Now, the organization serves 1900 families globally through its patient support group, social media, and website, offering them advocacy, support, guidance, and a place to share their experiences. KHI is currently headed by acting CEO Becky Futers, who is supported by a dedicated team of parents who have children with ketotic hypoglycemia: Tiffany Palms, Sara Wilson, Austin Carrigg, Yvette Ollada Lavery and Nicole Bøttger Jensen. The team works alongside leading experts in complex hypoglycemia across the globe, including Dr. Paul Thornton, Dr. David Weinstein, Dr. Partik Shah, Dr. Joseph Wolfsdorf, Dr. Terry Derks, and Dr. Mary-Elizabeth Patti. By uniting medical experts with affected families, KHI brings the latest research directly to those who need it. Annually, KHI hosts a conference for families and healthcare professionals, where the latest research, patient stories, and understanding of living with ketotic hypoglycemia are presented. The organization is fortunate to have been supported by various sponsors, who have assisted greatly in realizing its mission and yearly conferences. KHI is incredibly grateful for the hard work and dedication of its volunteers, which include both parents and medical professionals. Its team of staff consists entirely of parents with children who have ketotic hypoglycemia. On top of tackling regular parenting responsibilities, they also navigate the rare disease world, not only for themselves but also for the other children and families who are striving to make a difference. Often, they participate in meetings from the hospital bedside, between medical appointments, or on the side of their full working day. Additionally, KHI’s medical expert volunteers generously offer their free time where they can. In order to continue to support its families and improve the assistance it provides, the organization is hoping to grow enough to allow for at least one full-time member of staff in the future. When KHI recruits new volunteers, it seeks individuals who share its values and are committed to the rare disease community. The organization is proud to be run for patients and their families by patients and their families, which sets it apart from other organizations. No one knows the difficulties and battles of living with ketotic hypoglycemia better than those who face them every day. The organization is looking forward to carrying out more focused fundraising to support its families. Fundraising brought into KHI goes directly to the costs of its annual conference, support its families and research projects. Currently the staff team is working towards its first organised get moving challenge which will be launched later this year. Earlier this year, KHI ran its first annual ketotic hypoglycemia awareness day on 18th of February. It was a huge success; both its families and volunteers thoroughly enjoyed it. The KHI mascots were out in full force, helping to spread the word of ketotic hypoglycemia and bring fun to younger members.
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