The FCS Foundation Board of Directors

Apr 4, 2019

Board Members

Melissa Goetz

Co-President

Melissa is a mother of three children. Her middle daughter, Giuliana, was diagnosed with FCS (LPLD) when she was 3 weeks old in 2013 following routine blood work that appeared milky pink with triglycerides over 24,000 At 7 weeks old she was hospitalized with pancreatitis, a liver infection, and kidney infection. Following her hospital stay, Giuliana was put on a special MCT (medium-chain triglyceride) formula which lowered her triglycerides and allowed her to be released from the hospital. Since then, she has maintained a low-fat diet (less than 15 grams of fat per day) and has remained symptom-free. Giuliana is 8 years old, loves going to school, playing in the backyard, and swimming competitively for our local swim team.

Melissa can be reached at melissagoetz@livingwithfcs.org

Lindsey Sutton

Co-president

Lindsey was diagnosed with Lipoprotein Lipase Deficiency at five weeks old. As an infant, Lindsey cried often which caused her parents to take her to the doctor. She had lab work done and her blood was pink and milky, resembling Pepto-Bismol. Her triglycerides were over 30,000.

Because of this early diagnosis, she was put on a non-fat formula and followed a no-fat, low-fat diet as she got older. Lindsey had her first bout of pancreatitis at age 7, then again at 10, 14, and 17. Once she began college, her stress level increased, her diet changed and she experienced pancreatitis every 8 weeks for about two years. As a result, half of her pancreas is damaged, she had to have her gall bladder removed, has scar tissue, stomach discomfort, and a bit of a
fatty liver.

Today, however, with a well-maintained diet, exercise, and a good combination of medicine, she is healthy and has been pancreatitis free.

Frederick F. Saremi

Treasurer

Fred worked as a researcher in the field of Advanced Composites for more than 40 years.

He was diagnosed with high Triglycerides lipid levels, at age 30, it gradually increased to a level of 2600 mg/dL, and at times it was as high as 8000 mg/dL. This resulted in frequent pancreatitis episodes and trips to the Emergency Room. He was also diagnosed with Diabetes Type II when he was 50 years old. As an FCS patient, he has lived with a very unpredictable disease, where pancreatitis could strike at any time. Even when he followed a very restrictive low-fat diet. And he also had to cope with frequent and severe vomiting and diarrhea on a regular basis.

In August 2016 he was part of establishing the FCS Foundation and has been serving as Treasurer. Along with the rest of the board he has been active in participating in medical conferences and has made presentations to the FDA and members of Congress to enhance and promote the cause of FCS disease.

Darlene Voll

Secretary

Darlene was diagnosed with Hypertriglyceridemia at only a few weeks old. When tested at the hospital her pink blood was a clue that something was definitely wrong and her triglycerides were found to be over 20,000. She was immediately referred to John Hopkins’ Lipid center for genetic testing and dietary consultations for her parents. She had her second bout of pancreatitis at the age of 8 and then managed to stay pancreatitis-free through-out her teen years.

At 23, Darlene had her 3rd bout of pancreatitis while 23 weeks pregnant with her first child. The pregnancy caused her triglycerides to significantly rise and induce multiple complications in her body. She was in ICU for 2 weeks, hospitalized for nearly 4 weeks, and unfortunately lost her child.

Two years later, after close monitoring, she was able to have 2 successful pregnancies and now has 2 teen sons. After and during each pregnancy were very difficult and caused pancreatitis bouts annually or sometimes 2-3 times/year for the next 10 years. Darlene has had her gallbladder, spleen, part of her pancreas, and part of her stomach removed due to pancreatitis complications.

Today, however, she is able to manage her triglycerides by diet, exercise, and medications prescribed.

Qingyang (Yang) Li

Technology Chair

Yang experienced his first symptoms when he was three months old. He was taken to the hospital because he had incessant crying, rigid body and refused to eat. The doctors were shocked by the high fat content in his blood, but he did not receive a specific diagnosis. His parents were told to not have any more children and that he would not live long. The recurrent severe abdominal pain started at age10 and continued on and off. He received his first diagnosis of pancreatitis in college, but they did not take blood tests to confirm high triglycerides as the cause. He continued to experience more serious and frequent attacks of pancreatitis that prohibited him from obtaining his doctoral degree. Yang came across a book about a diet and recipes for people with high triglycerides. In the first chapter, it listed all the possible reasons a patient might have hyperlipidemia, and this included genetic causes. He diagnosed himself right then and was later officially diagnosed with genetic testing.

Yang is now 41 years old and a research scientist. He lives with his wife, daughter and son in Seattle.

Student Ambassador

Romal Mitr

Student Ambassador

Romal Mitr is a high school sophomore from Dublin, California. She is a fervent environmentalist with a mission to spread her passion for improving our planet one step at a time. As an active steward of this planet, Romal strives to shift the current paradigm through which we view our world ecosystems. Proposing novel solutions to complex problems, she is eternally pursuing environmental breakthroughs. Romal is constantly on the lookout for opportunities to showcase her love for environmentalism and share this spirit with the global community.

An accomplished geographer and filmmaker, Romal has represented Team USA in national and international geography competitions and has received many international accolades for her documentary. She now aims to apply these interests to her own environmental efforts and initiatives.

Romal strives to make a change in her community, whether at school, at city events, or on a worldwide platform. She is willing to join the next revolution… or start one herself!