FCS Focus

Meet Melissa. Melissa is a Co-President and Co-Founder of the FCS Foundation. Melissa is also the mother of a child living with familial chylomicronemia syndrome (FCS) and a tireless advocate for other people living with FCS. Learn more about Melissa’s background at https://www.livingwithfcs.org/a-mothers-story/. 

Living with familial chylomicronemia syndrome (FCS) can be a lonely and isolating experience, but it doesn’t have to be. There is an active and engaged online community of people who understand what you’re going through. Follow The FCS Foundation’s page at https://www.facebook.com/fightFCS to connect with others in the community. Together we can make a difference.

Ionis has launched KnowYourTGs.com – a new resource for people living with severe hypertriglyceridemia (sHTG). The website also features information about genetic causes of sHTG, such as familial chylomicronemia syndrome (FCS).

Maintaining a healthy lifestyle when living with familial chylomicronemia syndrome (FCS) can be hard. It can be easy to feel frustrated by others who don’t understand the serious consequences of eating foods high in fat. Take a deep breath and remember your health should always be your top priority. Visit knowyourtgs.com to learn more about FCS and severe hypertriglyceridemia (sHTG).

Meet Lindsey. Lindsey was diagnosed with lipoprotein lipase deficiency as an infant. Since then, Lindsey has become a dedicated champion for familial chylomicronemia syndrome (FCS) awareness and is a Co-President and Co-Founder of the FCS Foundation. Read Lindsey's story at https://www.livingwithfcs.org/lindseys-story/.

For people living with familial chylomicronemia syndrome (FCS), grilling provides opportunities to explore new flavors with old favorites. Try charring bell peppers or zucchini on the grill for an FCS-friendly side dish with a smoky twist. Fruits such as watermelon, pineapple, and peaches, are also incredible on the grill! Download the FCS Cooking recipe cards at https://bit.ly/3SKJ9Dk to get started.

Do you, or someone you know, have triglyceride levels ≥ 500 mg/dL? If so, you can help others living with hypertriglyceridemia by sharing your experiences in a new ‘at-home’ research study. The findings of the meTriG study will help researchers understand the day-to-day experiences of people living with severe hypertriglyceridemia. Eligible participants will be compensated for completing study activities. Download the meTriG Study Fact Sheet at https://bit.ly/47k8Puy to learn more.

Today is FCS Awareness Day 2023 - a global observance of support for the people who live with familial chylomicronemia syndrome (FCS) on this day, and every other day of the year. In recognition of this day, the people of lonis Pharmaceuticals have written an open letter to this rare and devastating condition. Read the letter at https://bit.ly/3QHzY5n.

Are you, or is someone you know, living with familial chylomicronemia syndrome (FCS)? Ionis Pharmaceuticals is looking for adults living with FCS who are interested in participating in an online group discussion. Participants will receive compensation for their time. If you are interested, please reach out to [email protected] for more information. Help others living with this rare disease by sharing your story.

Save the date for the 6th annual FCS Awareness Day! On November 3, 2023, we recognize the strength, tenacity, and perseverance of the individuals, caregivers, families, and healthcare professionals living with familial chylomicronemia syndrome (FCS). Learn more about FCS at FCSFocus.com.

It’s not too late to sample the flavors of summertime. Try making your own low-fat frozen treats by blending fruit with low-fat Greek yogurt or coconut water. Unlike other juices, unflavored coconut water is low in sugar and calories. Visit https://fcsfocus.com/nutrition/fcs-friendly-snacks/ for more low-fat snack ideas.

Ionis Pharmaceuticals recently launched TGAware.com, a comprehensive resource for physicians who have patients living with severe hypertriglyceridemia (sHTG). The site also features information about genetic causes of sHTG, such as familial chylomicronemia syndrome (FCS). As a healthcare provider, you can subscribe now and receive an informative guide on genetic testing for FCS. TGAware.com

Join others living with familial chylomicronemia syndrome (FCS) or severe hypertriglyceridemia (sHTG) and learn to cook low-fat meals for your summer BBQs and tailgate parties. On Wednesday, August 2, 2023 from 3:30pm - 4:45pm PT (6:30pm - 7:45pm ET) Registered Dietitian Nutritionist (RDN) and lipid specialist Mary Felando will coach online participants to cook black bean burgers and a zesty three bean salad. Click here to learn more: bit.ly/44mwxFC

National Triglycerides Day, March 28, 2023, is an important reminder about the health risks associated with high triglyceride levels – especially for people living with familial chylomicronemia syndrome (FCS). People with FCS have extremely high triglyceride levels that can rise to ten times the normal level or more. FCS Genetic Testing can help confirm an FCS diagnosis, guide treatment and management, and help people better understand how the disease may impact other family members. https://fcsfocus.com/genetic-testing/the-fcs-genetic-testing-program/

Meet Jeff, a person living with FCS. In this new video, Jeff talks about his health challenges, the benefits of getting a diagnosis, the strength he gets from his family, and the reality that not everyone with high triglycerides receives a positive genetic confirmation of FCS. Watch how one family lives with FCS. https://fcsfocus.com/2022-fcs-awareness-day/

Fred. Nicole. Lindsey. Melissa. Justin. Nicole. Eli. Jeff. These are just a few of the amazing souls we’ve met while working with the FCS community. You inspire us to eat healthier, work harder and live happier. Today we celebrate you on FCS Awareness Day 2022. https://fcsfocus.com/2022-fcs-awareness-day/

How much do you know about severe hypertriglyceridemia? More importantly, do you know what your average fasting triglyceride levels are? It’s time to look at it by the numbers. Learn more about . https://fcsfocus.com/2022-fcs-awareness-day/

People with FCS can’t digest fats. But there are many creative ways to enjoy an FCS-friendly food plan. The FCS Nutrition Binder provides more than 30 pages of tips, strategies, menus, and recipes to help you live your best life. Order your free copy at https://fcsfocus.com/get-tools/download-order-tools/

Living with FCS doesn’t mean you can’t enjoy delicious food bursting with flavor. If you like Mediterranean flavors, marinate diced, boneless, skinless chicken breasts in lemon juice and 1/2 tsp each of chopped oregano, basil, parsley, and minced garlic. Mix with 2 tbsp of MCT oil and bake. Place on top of a bed of chopped romaine lettuce, tomatoes, cucumbers, and a little bit of crumbled fat-free feta cheese. Opa! Spice up other international meals at: https://fcsfocus.com/nutrition/adding-flavor-without-adding-fat/

One of the challenges of living with FCS is learning to cook meals for families with non-FCS eaters. This is where “versioning” meals can help. Next time you have a group meal use the Taco Bar plan. Put out bowls of ground turkey breast for FCS eaters and ground beef or steak for non-FCS eaters. Include bowls of fat-free cheese, tomatoes, lettuce, onions, and cilantro for all. Everyone’s happy! Learn more about versioning meals athttps://fcsfocus.com/wp-content/uploads/2021/06/US-FCS-1900013_CookingMultiPerson.pdf

Veggie Frittata? Greek Lemon Chicken? Ginger Shrimp with Chinese Vegetables? Living an FCS-friendly lifestyle doesn’t have to be a bland chicken breast night after night. Discover an entire week’s worth of menu ideas athttps://fcsfocus.com/wp-content/uploads/2021/06/US-FCS-1900013_7DayMenu.pdf

Maintaining an FCS-friendly lifestyle can be overwhelming. Use the 10-Day Planner to jump-start your FCS Nutrition Plan. Day 1 will have you researching key FCS nutrition concepts. On day 2 you’ll build a menu for the week and grocery shop for healthy foods. And you’ll be ready to cook on day 3. Discover the other 7 steps to stay on track athttps://fcsfocus.com/wp-content/uploads/2021/06/US-FCS-1900013_10DayJumpStart.pdf

It’s Spring! Looking for a refreshing low-fat snack as it gets warmer outside? Try blending ½ cup skim milk, ½ cup non-fat Greek yogurt, and ½ cup fresh fruit with ice for a cool treat. This smoothie is also great as a quick breakfast or lunch replacement. For more low-fat snack ideas, visit https://fcsfocus.com/nutrition/fcs-friendly-snacks/

Living with FCS is hard, but maintaining a low-fat nutrition plan shouldn’t be. Prepare for spring cookouts with a well-stocked refrigerator. Include FCS-friendly options such as skinless chicken breasts, extra lean turkey burgers, portabella mushrooms, asparagus, zucchini, and fruit – all are great on the grill. Download the entire FCS-friendly foods list at https://fcsfocus.com/nutrition/focus-on-what-you-can-eat/

Join and people from around the world in observing this February 28, 2022. Let’s help others to look beyond the diagnosis of rare diseases like familial chylomicronemia syndrome (FCS). Learn more at https://www.facebook.com/rarediseaseday/