Virtual Epilepsy Education Conference to Celebrate Purple Day

Purple Day

Each year, The Anita Kaufmann Foundation and the Epilepsy Association host the Purple Day® Around the World Epilepsy Education Conference with the hope of de-stigmatizing epilepsy by educating the public. The last three years, the conference has been held at Disney World®. This year, due to the worldwide pandemic, this FREE conference is being held virtually, giving the opportunity for more to attend without safety and travel concerns.

Conference Agenda

The virtual conference will take place March 24th thru March 26th. The first two days will consist of educational and advocacy sessions with well-known doctors, experts and epilepsy organizations.

  • Coach Caprice O’Bryant, Fitness Expert, Entrepreneur & Author, will hold daily warmups in support of Lace Up For Epilepsy to get us moving and ready to learn 
  • Dr. Dan Freidman of NYU Langone School of Medicine will discuss epilepsy and technology, homeschooling us on the latest options out there and how it can help you manage your epilepsy lifestyle 
  • Pamela Kelly, US VA Acting ECoE National Administrative Director, will homeschool us on what the VA currently offers Veterans with epilepsy 
  • Purple Day(R) Every Day Brigid Fennessy Baffico, a music teacher, will discuss the importance of education in epilepsy 
  • Dana Simmons, PhD, a neurobiologist, microscopy Artist & medical writer will help us find meaning through science art 
  • Dr. Eric Kossoff of Johns Hopkins Children’s Center will homeschool us on ketogenic diet basics and how it may help people with epilepsy 
  • Our keynote session features Dr. Rob Trobliger of Northeast Regional Epilepsy Group and centers on epilepsy and mental health  
  • Kim Davidson CEO of BC Epilepsy Society and founder of I AM A VOICE for Epilepsy Awareness™ takes on global advocacy 
  • Jamie Wissinger, Blogger, Podcaster and Epilepsy Advocate will share five mindset tips for managing epilepsy 
  • Eric Carter, author of young adult book series, Chance Dawson Stories, will be introducing Chance Dawson, a fictional character, who represents people with epilepsy. 
  • Tammy Smits Sommer and McKinleyPurple Day® Everyday Day Ambassadors, be homeschooling us on The Great Purple Cupcake Project and how YOU can get involved 

Learn more about speaker sessions and what to expect!

Register Today

Nearly 1000 people have registered for Purple Day® Every Day’s annual epilepsy education conference. Registration is open and the conference has more epilepsy education sessions planned than ever before. Check out our growing list of speaker sessions, all focused on specific key areas of epilepsy education.

REGISTER TODAY

Virtual Expo

Other leading organizations across the epilepsy spectrum will host virtual booths on various epilepsy topics. These organizations include: Danny Did Foundation4 Paws for AbilityThe Epilepsy StoreBrain and LifeChelsea Hutchison Foundation, Seizure TrackerCUREPAMEMatthews Friends, HannahtopiaTS Alliance, Capabilities, BC Epilepsy, Practical Neurology, Dup15Q Alliance, The Charlie Foundation, Epilepsy Association, Purple Day® Everyday, Dravet FoundationPurple Day Asia.

And of course, Living Well With Epilepsy will have a booth too!

Presenting Sponsor

In addition to these great sessions, the Presenting Sponsor, Eisai Inc., will offer two important sessions on hot topics in epilepsy from their perspective.

For more information on the Purple Day® Around the World Epilepsy Education Conference, contact Lena Lache at Lena@akfus.org.

Global Epilepsy: Helping Those with Living with Epilepsy in Uganda

Epilepsy in Uganda

My name is Gideon Ronald Akanyijuka. I am CEO of Epilepsy Awareness Uganda (EAU). EAU is a Non Governmental Organization (NGO) that brings together all persons affected by epilepsy in Uganda.

This past year has been so difficult for everyone, but for people living with Epilepsy, it has been even more difficult. Considering there was a total lock down for three months in Uganda, getting medication was even more difficult than usual. And this made the conditions of most people living with Epilepsy that much worse.

Having less food or no meals at all proved to be a problem for those people with epilepsy who take medication. We received so many calls from our epilepsy awareness Uganda family who needed help but we could only reach out to few, due to fewer funds available.

Gratitude for the Good Times

Though the year has been difficult we have had some good times. EAU has received donations of wheelchair to benefit one of our community members who really needed a wheelchair for easy movement. We also received masks and sanitizers for our epilepsy family.

Life is about being honest, real, humble, understanding, and being able to reach out and touch the lives of others while holding gratitude in your heart. Thank you to all who have supported EAU in our time of need.

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Social Connections and Epilepsy: Discovering the impact of sharing one’s story

Social Connections and Epilepsy

After features in Indian newspapers, my first blog was published on Living Well with Epilepsy. That story focused on my background as an endurance cyclist and a marathoner and I shared that blog with my neurologist Dr. Manjari Tripathi who is also a professor in All India Institute of Medical Sciences – Delhi and she asked me to be a patient speaker on a webinar of Indian Epilepsy Association on National Epilepsy Day.

Public Speaking

Going live and speaking about how I overcome the fear of uncertainty of having seizure and accepted my chronic illness was a different kind of exposure for me. Two weeks later I was invited on another interactive webinar where people asked me precautions I take while cycling or running.

Safety on the road

Participants also asked how I manage myself if I get seizure during exercise activities. I let listeners know that I always wear an ID band which has my SOS contacts and wear a smartwatch which gives a location to my caregivers. And most important, whenever I feel an aura of having seizure I prefer to stop just to be safe.

On Becoming an Advocate

I then joined the Samman NGO group which is the Mumbai chapter of Indian Epilepsy Association and started attending their webinar as a member. One day they set up a meeting to discuss the 50 Million Steps campaign of International Bureau of Epilepsy. I suggested the group could do a Virtual Walkathon on a day before of the International Epilepsy Day. The group was enthusiastic and they managed the virtual event very well and raised almost 28million steps in 5weeks.

Due to pandemic most of the races I enjoyed participating in were cancelled or went virtual. I did do some half marathons virtually to keep myself motivated. And I got the idea of Virtual Walkathon from these virtual events only.

Social Connections and Epilepsy

Though people with epilepsy may be totally different from each other in nature, behaviour, experience and when start becoming part ofa community you learn new things, unlearn old things and relearn them in a better manner. This is what I discovered by sharing my story and the social connections within the epilepsy community.

Patience and Epilepsy: A great ally when it comes to managing stress

Justin’s Story

For 35 years I have had epilepsy and have found that although I have my seizures under control with medication, occasionally they will happen even with taking medication. Over the years I have been on more than 15 different medications. A more likely number would be 20, however I can’t exactly recall to be honest.

One of the side affects of having seizures and some medications are memory loss. Some days are good and things go smooth, and some days are not so good and are a bit turbulent more or less. It’s important to understand this in the moments of frustration when you can remember a sentence and or event that was just on your mind. Has memory loss ever been part of your frustration?

To keep the turbulence to a minimum accepting that our brain and the neural networks may be a little over worked, and taking it slow for the time being is probably a good idea. These moments happen to me from time to time and are certainly uncomfortable and frustrating, especially around others in day to day life or work. I encourage you to try to remain calm in these moments and let them pass, they are only temporary but at certain times can happen.

Patience and Epilepsy

Patience has been my best ally, and by recognizing these moments for what they are helps to reduce any stress and anxiety that is potentially causes. Those with epilepsy and partners of epileptics should be aware of this so to help remember or remind us that it’s much easier to be aware and except this. Some days will be good, some in between and some will be better spent being patient and compassionate with ourselves.

Although it has been difficult at times living with some of these side effects It takes strength to adapt to the constant changes and ups and downs that come from epilepsy. I used to view my condition in a negative light, however there is an opportunity to embrace the positive. I hope this helps you or someone you love that has epilepsy.

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