Lode CarnelPassionate about renewable energy, Lode is the CTO of Kitemill, a Norwegian start-up within the wind energy technology space. He obtained a Ph.D. within solar energy and completed an MBA during his career. Together with his family he founded the Eye Hope Foundation in 2015 where he is responsible for the research projects. Victor his son was the first Wolfram child worldwide to start treatment with Victoza, a promising treatment currently available to Wolfram patients. The foundation publishes a bi-yearly newsletter and is currently supported by three Wolfram families in Belgium and all their network connections.
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Stephanie Snow GebelStephanie founded The Snow Foundation for Wolfram Syndrome Research (WS) in 2010 when her five-year-daughter Raquel was diagnosed with WS. It is her heartfelt mission to lead a global movement of patients, families, doctors, and researchers who will work together to improve the lives of everyone affected by WS. Stephanie received a bachelor’s degree in Sociology and Exercise Sports Science from the University of Arizona. She is a proud mother of four and a great advocate for the rare disease community.
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Sarah J. Gladstone, MDSarah is a pediatrician who completed her MD at Vanderbilt University and pediatric residency at The Children's Hospital of Boston prior to practicing in primary care for 15 years. She began working with WS researchers and parents to facilitate communication and help find a treatment for WS after her daughter was diagnosed with WFS1-Related Disorder in 2016. Sarah started the Unravel Wolfram Syndrome Fund to support WS research by Dr. Fumi Urano at Washington University in St. Louis and joined forces with other WS parents to help create WSRA in 2020.
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David Hill, MD David is a member of the Lung Association's National Board of Directors and is the immediate past chair of the Northeast Regional Board of the American Lung Association. He is a practicing pulmonary and critical care physician with Waterbury Pulmonary Associates and serves as their director of clinical research. David and his wife Tracy reside in Connecticut and have 2 daughters. David’s youngest daughter Sarah developed optic atrophy at age 8 and was diagnosed with Wolfram Syndrome when she developed diabetes mellitus at age 13. He is strongly committed to supporting efforts to find treatments and a cure for Wolfram Syndrome.
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Nolwen Le FlochNolwen Le Floch is the President of the Association Syndrome de Wolfram - a foundation born out of the fierce desire of families to fight this disease. The association has organized 7 international congresses of researchers and clinicians, created an international network which is enriched each year, initiated a European patient registry, launched research, several of which it has funded, set up two multidisciplinary consultations in France dedicated to this disease and organized investigations into cases that had not yet been studied by the medical profession. "We have an obligation to meet the challenge posed by Wolfram Syndrome: Help doctors and scientists to understand it better, and in order to treat it support those who, on a daily basis, fight against disease."
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Tracy LynchIn 2010, following 3 years of monthly tests, Tracy’s then 8-year-old daughter Jennifer was diagnosed with Wolfram Syndrome. She and her husband Paul were given 2 pieces of A4 paper with some information & the doctors saying we don’t know anything about this condition. They went away and started to find out what they could about WS and where they could go for help, but there was nothing in the UK. A few weeks later they started Wolfram Syndrome UK support group to help them as well as any other families. In 2013 WSUK became a registered charity.
Since 2011 Tracy has organised an annual conference for WS families, medical professionals and support from the UK and abroad. In 2014 WSUK delivered information to 25 national children’s hospitals in the UK to raise awareness amongst the medical teams there. WSUK have pledged financial support to the TREATWolfram clinical trial to cover travel and accommodation costs over the 3 years of the trial to ensure that all the UK recruits are able to continue through to the end. Tracy is happily married to Paul & together they also have 2 older sons as well as Jennifer, their youngest. Her background is in catering, retail and bookkeeping but since 2012 she has worked full time for the charity as well as caring for Jennifer, who unfortunately has an extreme progressive version of WS. |
Mark Silberman and Sonita SingwiSonita Singwi is a visual artist. She received an MFA in Painting from Hunter College, and an MA in Art History from New York University. Mark Silberman is a lawyer and General Counsel of the NYC Landmarks Preservation Commission. They have lived in Brooklyn for over 33 years. In 2001 their daughter Maya was born three weeks before September 11. We understood that we were bringing Maya into an uncertain world with an uncertain future. Her diagnosis of Wolfram Syndrome in 2013 underscored this fact. As parents there is nothing more important to us than making sure that Maya and others with Wolfram Syndrome live full lives and reach their potential. Our goal is to raise funds for medical research to find a cure, and to support other families. With that goal in mind we raised money for the Snow Foundation and have established a fund at Washington University in St. Louis in Maya’s name to support Dr. Urano’s research.
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Beth White & Ellie WhiteBeth was born a curious and determined introvert – the making of a scientist. Ellie was born a passionate and strong extrovert – a natural leader. After being diagnosed with Wolfram syndrome in 2009 at age 8, they founded the Ellie White Foundation for Rare Genetic Disorders to help find a cure for WS. They focus on finding and funding the best cutting edge research that might lead to a cure, including Dr. Urano’s clinical trial - the first ever for WS. They work tirelessly to spread awareness and raise money for research as they pore over the scientific literature looking for clues for a cure. In their “free time” Ellie (now blind) is working toward her degree in Psychology, and Beth continues her 20+ years at the University of Colorado School of Medicine focused on clinical trials to find a cure or vaccine for HIV and now Covid-19.
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