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Special Post for Epilepsy Awareness Month

As many of you know, November is National Epilepsy Awareness Month, so today’s KetoConnect blog post is a special Epilepsy Awareness edition. Read below for an overview of Nutricia’s Purple Day for Epilepsy Awareness and to view our new infographic to help spread awareness about epilepsy and the ketogenic diet.

Nutricia North America Purple Day for Epilepsy Awareness:

Last Friday was “Purple Day” here at Nutricia North America. The KetoCal team committed to donate $5 for every Nutricia North America employee who wore purple to work for epilepsy awareNNAPurple2014ness. It was a sea of purple in the office and our internal social media site was flooded with photos of employees across the US and Canada sporting purple. We were so impressed by everyone’s enthusiasm that we decided to double the funds raised.

Friday’s fundraiser will be used to sponsor a child to attend Camp Great Rock, a camp specifically for children and teens with epilepsy. Great Rock campers get a chance to experience the joys of summer camp in a safe environment, under the medical supervision of the Neurology team from Children’s National Medical Center, our local children’s hospital here in Washington D.C.

Epilepsy and Ketogenic Diet Awareness Infographic:

Also in recognition of National Epilepsy Awareness Month, we created this Infographic to help spread awareness about epilepsy and the ketogenic diet as an option for those with intractable seizures. Please feel free to share, pin, post, and spread the word!

How are you recognizing Epilepsy Awareness Month?

-Mallory

 

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Summary of the 2014 Global Symposium for Ketogenic Dietary Therapies

We’ve just returned from Liverpool, England where we attended the 4th Global Symposium for Ketogenic Dietary Therapies for Epilepsy and Other Neurological Disorders, hosted by Matthew’s Friends. Our brains are full of new and exciting information, so for this week’s blog post, I thought I’d share an overview of the conference with you.

As mentioned, this year’s Global Symposium was held in Liverpool, UK and hosted by Matthew’s Friends. For those of you not familiar with Matthew’s Friends, it is a charity based in England dedicated to spreading awareness and providing access to the ketogenic diet. It was started by Emma Williams, mom to Matthew, whose seizures and quality of life improved on the ketogenic diet. The mission of Matthew’s Friends is very similar to that of the Charlie Foundation here in the US, and the two groups often work together (The Charlie Foundation hosted the last Global Symposium, held in Chicago in 2012).

The Global Symposium consisted of 4 days of presentations for health care professionals, followed by a family day for families of children on the ketogenic diet, some adult patients on the ketogenic diet, and some individuals who are just interested in learning more about it. There were 5 of us from the US KetoCal team who attended the symposium, in addition to our KetoCal colleagues from the UK, Germany, Netherlands, and Spain. KetoCal had a booth in the exhibitor’s hall and as always, Chef Neil wowed visitors with his KetoCal recipe creations. We were excited to see our fellow US buddies from the Glut-1 Deficiency Foundation in the booth right across from us!

Day 1:

The conference kicked off on Tuesday with a dietitian’s meeting in the morning, followed by the opening sessions for the professional program in the afternoon. After the close of the sessions, Matthew’s Friends hosted a Welcome Reception where everyone could catch up with old friends and meet new members of the global keto family.

Matthew’s Friends created awesome video overviews of each day of the conference. Here is the video of Day 1.

Day 2:

Wednesday morning covered utilization of the ketogenic diet for specific epilepsy syndromes, including Dravet Syndrome, Doose Syndrome, Infantile Spasms, Status Epilepticus, FIRES, Angelman Syndrome, and Tuberous Sclerosis. In the afternoon, we heard presentations about the possible “mechanisms of action” of the ketogenic diet (or for those of us who are not doctors, we learned a little about how and why the diet is thought to work). That evening, we got to visit the Museum of Liverpool for the poster session. This was one of my favorite parts of the conference- Researchers from all over the world displayed posters presenting their brand new research on the ketogenic diet.

Watch the Matthew’s Friends’ video summary of Day 2 here.

Day 3:

On Day 3, researchers discussed secondary effects of the ketogenic diet, such as the diet’s effects on cognition, learning, behaviors, and bone health. Dr. Kossoff, who some of you may know from the Ketogenic Diet Center at Johns Hopkins University, talked about the long term use of the ketogenic diet. Next, a group of ketogenic dietitians talked about the clinical implementation of the ketogenic diet. The afternoon sessions focused on “optimizing utilization” of the diet. The presenters talked about utilizing the diet in specific age groups, including infants and adults, and in specific situations, such as for patients in status epilepticus. Emma Williams presented on ways to better support families and prepare them for managing their child’s ketogenic diet. That night, we had the privilege of attending the Matthew’s Friends Charity 10th Anniversary Gala Dinner. We enjoyed some great food and an awesome Beatle’s cover band (when in Liverpool!).

View the video summary of Day 3 here.

Day 4:

We started Day 4 of the professional conference with presentations on using the ketogenic diet across different cultures and settings. Next, we learned about the ketogenic diet for patients with mitochondrial disease and specific metabolic conditions, including pyruvate dehydrogenase deficiency and Glut-1 Deficiency. In the afternoon sessions, we learned about research being done on the ketogenic diet for cancer, a new and exciting topic for the ketogenic diet community. We ended the day with discussions about the future of the ketogenic diet and the announcement of the 2016 Global Symposium, which will be held in Banff, Canada!

Watch the Day 4 video summary here.

Family Day:

Family Day is always my favorite part of the Global Symposium. It’s exciting to meet families and learn about their ketogenic diet stories. In the morning, presenters gave families an overview of the presentations from the professional sessions. In the afternoon, we broke up into workshops for specific areas of interest. Between sessions, Chef Neil made some amazing KetoCal recipe creations for families to try, including some popular British foods, Scotch Eggs and Yorkshire Pudding! The UK KetoCal team launched some new KetoCal recipe books. There’s one for a 4:1 ratio, 3:1 ratio, Modified Atkins Diet, and MCT Ketogenic Diet.  Families got to take one home and they were a huge hit. We are in the process of putting some US versions of the recipe books together so keep an eye out for them in the next few months!

See the video summary of Family Day here.

Well done, Matthew’s Friends, on a very successful, informative, and fun Global Symposium. We are already looking forward to seeing everyone in Banff in 2016!

-Mallory

Below are some photos from the week.

Big News: We Have a Blog!

BlogWe are so excited to announce our blog, KetoConnect, an online resource for parents of children on the ketogenic diet for epilepsy. The purpose of KetoConnect is to keep keto moms and dads informed of the latest news and events, while sharing useful tips, recipe ideas and resources to support you in managing your child’s ketogenic diet. We hope KetoConnect will provide support for parents at various stages of their child’s ketogenic diet journey, from the time they start considering  and researching it, to the time their child is weaned off of the diet.

KetoConnect is written by a team from Nutricia North America, the makers of KetoCal®, so we will provide parents with useful information, tips and recipe ideas related to KetoCal. However, the goal of the blog is to provide support for the ketogenic diet in general so our posts will cover a broad range of topics. We’ll even have parents and health care providers as guest bloggers to provide a variety of perspectives. Please let us know if you are interested in contributing!

Starting next Tuesday, look out for our weekly blog posts. We hope you’ll join the conversation and welcome your questions, comments, topic suggestions, and feedback!

-The KetoConnect Team

Photo: Flickr user xioubin low