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Welcome to Epilepsy Southwestern Ontario's E-blast. Your quarterly newsletter from Epilepsy Southwestern Ontario covering the latest in epilepsy news from our clients, our agency, and around the world.
July 2020

Summer Update from ESWO

Greetings from the Chief Executive Officer

Well...what a very strange few months it has been! Feels as though we are on the set of a movie  – maybe the Twilight Zone?  We know that COVID-19 has impacted each of you in so many ways and do hope that this e-newsletter finds you and your loved ones healthy.  We have certainly appreciated your support during this time of crisis and have been overwhelmed by your generosity, warm check-ins with staff and patience while we return to working in the office.

I also wanted to take a moment to say a special thank you to our landlord - Southside Group.  For those who are unaware, the Federal Government initiated a voluntary program called the Canada Emergency Commercial Rent Assistance (CECRA). Participation in this program means that our rent is covered in the following manner:

Government of Canada – 50%
Southside Group - $25%
ESWO – 25%
 
Therefore, our rent was reduced by 75% for the months of April, May and June, because we had a reduction in our revenue by 75% during this period. What this also means, is that Southside Group voluntarily took a 25% loss in rent revenue in order to help ESWO in this time of economic difficulty. We are extremely grateful to Southside Group for their compassion and generosity. In fact, since we moved to 797 York Street, they have financially supported all our special events and have also offered new fundraising opportunities to us. Participating in CERCA is just another example of Southside Group giving back to the community.

We have certainly felt the love over the last few months and are so appreciative of all of you!

Warm regards,


Michelle Franklin
Chief Executive Officer
 

McKenzie Johnson

Living With Epilepsy

I had my daughter Amaya at 29 weeks when I was 19 years old. When she was born, she weighed 1 pound and 1 ounce but was overall pretty healthy. We stayed in the hospital for 3 months until she weighed 4 pounds. During that time, her IV became infected and the infection went to her brain. She was given antibiotics that took away the infection but she was left with scar tissue.

At 6 months old, she had her first febrile seizure. Amaya was sleeping in her room while I was watching TV in the living room. I started to hear weird sounds coming from her room so I went to check on her. I found her struggling to breathe and her whole body was stiff. She had secretions coming from her mouth and was twitching. I instantly picked her up and called 911. They coached me through what to do until the paramedics arrived. When they arrived, she was still seizing and it appeared that she was struggling more and more to breathe. I was speechless as the paramedics tried to get her vital signs. I felt as if I was watching my daughter slip away from me. Her seizure was about 20 minutes long. I was dumbfounded that this could be happening since we had stayed in the hospital for so long and the doctors said she should be fine going forward. There were so many people constantly praying for Amaya every day and this made all the difference to me. 

Amaya had about half a dozen febrile seizures in the span of 4 years and only seized when she had a fever. On January 3, 2018, I went to pick Amaya up from daycare and arrived to find her on the floor of her classroom seizing with all the teachers around her. The teachers were not sure what to do and paramedics were on the way. We went to the hospital where the nurses gave her multiple medications in an attempt to stop her seizure. The seizure lasted over half an hour, and when it stopped, her whole right side was paralyzed. Thankfully, after several hours her mobility came back. She went for many tests, including an MRI. When the results came back the doctors diagnosed Amaya with epilepsy and informed me that her seizures were not just febrile but were caused by the scar tissue in her brain. She was prescribed a medication that she would need to take every day. 

We were sent home the same day that Amaya was diagnosed. I was so scared and worried about the future. I had no idea how to care for a child with epilepsy. I had so many questions running through my head. I continued to remind myself to be strong for her. When I got home, I started searching for support groups and places I could get more information about epilepsy. That is how I found Epilepsy Southwestern Ontario. They explained some crucial information as well as things I should not do with a child with epilepsy. They also directed me to some books and Facebook support groups - which were very helpful. The support groups allowed me to talk to others going through the same things I was. It was very hard for me to cope with Amaya’s seizures because most of the time there were no warning signs. 

I thought that as time went on things would get easier and I would get “used” to it but boy, was I wrong. For me, every time she seizes, it feels like the first. I never know how long it will last or how she will be when it ends. Sometimes it takes a long time (45 to 60 minutes) for her to come back to full functional ability. After seizures, she is unable to talk or walk, is very confused, frustrated, crying, weak, fatigued, shaky, has memory loss and is sometimes paralyzed. Not all of Amaya’s seizures are the same, which is hard because you do not know what to expect.

Having a daughter with epilepsy has affected my life tremendously. I am constantly worried, especially when she is not with me because she could have a seizure at any time. I have to be very strict and diligent with her daily routine, as she has some atypical seizure triggers. Some of her triggers include; medication not taken at the same time or given correctly, lack of sleep, extreme temperatures changes, high temperatures and not eating regularly throughout the day. 

One thing I have learned about myself is that I am so much stronger than I thought. Being a single mom with a child with a very sensitive condition brings a lot of stress, worry and hospital visits. I have gained so much interest in healthcare and strive to be a nurse. This way, I can provide the best care possible for my daughter and be prepared to care for her medically. I am currently a Personal Support Worker at London Health Sciences Centre and learn so much every day. I want all parents who have children with epilepsy to know YOU ARE NOT ALONE. Reach out if you have questions and talk to someone if you need to get something off your chest. Waking up every day to the unexpected is not easy, and doing it shows you are so much stronger than you think. Keep striving to be better, continue educating yourself and your child will benefit so much from that. Know that it is okay to cry, feel scared and/or break down - we all do! The most important thing is getting back up for our little ones. Our strength and perseverance gives our children hope and reassures them they are some of the strongest humans out there.
 

Take A Chance For Epilepsy

Province Wide Monthly 50/50 Raffle

WE ARE LAUNCHING this new and exciting PROVINCE WIDE MONTHLY 50/50 RAFFLE to support Epilepsy Agencies across Ontario. #EPILEPSY5050

Tickets are available online only at www.epilepsy5050.ca

Tell your friends to get their tickets! Don't let them miss out!

Expect the UNEXPECTED when it comes to how much you will win... 

Proceeds from this monthly on-line 50/50 raffle will help provide education, advocacy, information and support services to the almost 95,000 people living in Ontario with epilepsy.

Thank you for your tremendous support! Stay safe.

July draw will close on July 30th and the draw will be on July 31 at 11:00 AM. The winner will be contacted by email. The raffle is open to 18 and older residents of Ontario ONLY.
 

Anti-Racism Statement

In recent weeks, we have witnessed the impact of historical and present-day racism, inequity, violence, and inaction on global communities, including the communities we serve. Epilepsy Southwestern Ontario (ESWO) stands united with our clients, partners, and communities against all forms of racism and discrimination. We understand that this is a complex issue that must be addressed and confronted through proactive measures.

ESWO strives to enhance the lives of those who are affected by epilepsy by providing a network of services that educate, support, and raise public awareness. We are dedicated to creating a community free of barriers, where individuals with epilepsy are empowered and supported to live a life of dignity, self-worth, and hope. However, we recognize that Black, Indigenous, and People of Colour (BIPOC) with epilepsy face additional challenges throughout each stage of their journey as a result of racial discrimination that is embedded in the dominant culture and social institutions. We acknowledge that it is our responsibility to reduce the systemic barriers that prevent racialized communities from acquiring the support and resources they need and deserve.

In collaboration with our colleagues, partners, and volunteers, ESWO vows to:

Listen to and amplify the voices of BIPOC in our community living with epilepsy, in an effort to gain an in-depth understanding of their individual experiences and the barriers they face on a daily basis.

Continue learning, growing, and identifying ways to improve our cultural sensitivity, accessibility, and inclusivity within our organization. We will work to better comprehend how race, poverty, and other social determinants of health impact people living with epilepsy and their families.

Take immediate action to address and reduce barriers within our own organization by providing thorough training for our staff, including Diversity, Equity, and Inclusion training and Racism and Racial Discrimination Prevention training. ESWO will also review all organizational policies, practices and decision-making processes to ensure they align with our values of diversity, inclusion, and equity. We will incorporate what we have learned into all aspects of our organization.

We stand in support of those who are advocating for change. As a community-based organization, ESWO is dedicated to building caring and safe communities for people affected by epilepsy. It is our obligation to actively engage in conscious efforts to break down barriers, promote inclusive and accepting communities, and embrace diversity. We are committed to doing the work, and we will continue to develop and expand our initiatives as we acquire more knowledge and awareness through the on-going process of listening, learning, and acting.
 

Virtual Escape Room

Taken: The Swiss Account

Stuck inside avoiding this scorching heatwave? Miss hanging out with friends and family? Looking for a fun way to support Epilepsy Southwestern Ontario? 
 
WE HAVE A SOLUTION FOR YOU!
 
Try Escape Manor’s virtual mystery – Taken: The Swiss Account.
 
RECONNECT WITH FRIENDS AND FAMILY OUTSIDE OF YOUR SOCIAL BUBBLE.

Play using a video conferencing program like Zoom, Google Hangouts, or Facetime and see how fast your team can help the United Nations release a kidnapped executive!
 
Use the PROMO CODE EPILEPSYSWO when purchasing the game ($19.99 + tax per group) and $4 will go to Epilepsy Southwestern Ontario. 
 
Tell your friends and family. The more people who use our promo code means more fun and more support for epilepsy services in our community.
 
Visit escapemanor.com/taken to play.  Don't forget to use the promo code EPILEPSYSWO.

Good luck, virtual detectives!

Congratulations!

Dr. Simon Levin and Dr. Richard McLachlan

Epilepsy Southwestern Ontario (ESWO) would like to take this opportunity to wish Dr. Simon Levin and Dr. Richard McLachlan well on their retirements. Thank you for your many years of helping people living with epilepsy and your support of ESWO! Congratulations to you both!

       

Annual General Meeting

Virtual Meeting


This year our AGM will be held on September 16th at 5:30 p.m.

Please RSVP via email to michelle@epilepsyswo.ca by September 9th for registration details.
 

Project UPLIFT

Coming this September!

Webinar Series

Epilepsy Education


COVID-19 can't keep us from sticking together! Over the past few months, Epilepsy Southwestern Ontario has been connecting with the community by hosting webinars in order to share important information related to epilepsy.

To find a list of our previous webinars, please go to the following link: https://www.youtube.com/playlist?list=PLVLI0oYWdAO-g1S-D_LZEBOGtWYaYl0xt.

More webinars will be coming your way. Don't forget to stay tuned and find the details at https://www.facebook.com/epilepsyswo/

Epilepsy Links

What's Happening on the Internet

Regional News & Events

London Middlesex

7th Annual Seize the Day

Presented by: Coulter's Pharmacy

Epilepsy Southwestern Ontario (ESWO) kicks off the 7th Annual Seize the Day 5k Run / 2.5k Walk on Saturday, September 12, 2020.

Even though we have been forced to host the event virtually, the goal is the same….to raise funds to provide support and educational services for people living with epilepsy, their families and their communities throughout Southwestern Ontario. 

Whether you are participating to honour someone you sadly lost to a seizure, supporting those affected by epilepsy, or want to help raise awareness, we invite you to join us for this special occasion. If you are a marathon runner, a leisurely jogger or a casual walker…everyone is welcome to participate! We hope you can join us and help make this annual event even bigger this year to show people living with epilepsy that they are not alone! 

How It Works

A virtual run is a race that can be run (walked or in a wheelchair/stroller) from any location you choose. You get to create your own route, participate at your own pace and time it yourself (if you so desire). You have from September 12 – 27, 2020 to complete your 2.5 or 5K.  

  1. Register your team (waived registration fee this year)
  2. Order your event t-shirt ($20 – $25 each) no later than August 7, 2020 if desired (no delivery – predetermined pick up locations in London, Windsor area, Seaforth only).
  3. Collect pledges from your friends and family. View Pledge Forms here.
  4. Download your “I am walking for” sign. 
  5. Mark your calendar to tune into the Opening Ceremony via Facebook Live or our YouTube live stream on Saturday, September 12, 2020 at 10 a.m.
  6. Have your team complete your walk or run between the specified time period (take lots of pictures and tag us on social media…let’s see your purple!)
  7. Download your participant certificate.
  8. Celebrate with us! Join us for the Closing Ceremony via Facebook live or YouTube live stream on Sunday, September 27, 2020 at 4pm. Total raised and prize winners will be announced.

Wacky Wednesday Summer Camp


Hey Kids….Scott is back for another year of summer fun! Camp will be very different this year, but rest assured Scott is cooking up some great ideas to connect with all of you this summer! Stay tuned for more details, and connect with Scott to express your interest at kidscamp@epilepsyswo.ca.

Third Party: Palasad 

$1060! WOW! We are thrilled with this total and incredibly thankful to Palasad Socialbowl for their partnership. Thank you to all of those who supported this initiative! 

Chatham Kent

Third Party: Epilepsy Awareness Fundraiser

Huge thank you to The Purple Pansy Flower Boutique for raising and donating $288 for March Epilepsy Awareness Month. We truly appreciate your continued support!

Windsor Essex

4th Annual Seize the Day

Epilepsy Southwestern Ontario (ESWO) kicks off the 4th Annual Seize the Day 5k Run / 2.5k Walk on Saturday, September 12, 2020.

Even though we have been forced to host the event virtually, the goal is the same….to raise funds to provide support and educational services for people living with epilepsy, their families and their communities throughout Southwestern Ontario. 

Whether you are participating to honour someone you sadly lost to a seizure, supporting those affected by epilepsy, or want to help raise awareness, we invite you to join us for this special occasion. If you are a marathon runner, a leisurely jogger or a casual walker…everyone is welcome to participate! We hope you can join us and help make this annual event even bigger this year to show people living with epilepsy that they are not alone! 

How It Works

A virtual run is a race that can be run (walked or in a wheelchair/stroller) from any location you choose. You get to create your own route, participate at your own pace and time it yourself (if you so desire). You have from September 12 – 27, 2020 to complete your 2.5 or 5K.  

  1. Register your team (waived registration fee this year)
  2. Order your event t-shirt ($20 – $25 each) no later than August 7, 2020 if desired (no delivery – predetermined pick up locations in London, Windsor area, Seaforth only).
  3. Collect pledges from your friends and family. View Pledge Forms here.
  4. Download your “I am walking for” sign. 
  5. Mark your calendar to tune into the Opening Ceremony via Facebook Live or our YouTube live stream on Saturday, September 12, 2020 at 10 a.m.
  6. Have your team complete your walk or run between the specified time period (take lots of pictures and tag us on social media…let’s see your purple!)
  7. Download your participant certificate.
  8. Celebrate with us! Join us for the Closing Ceremony via Facebook live or YouTube live stream on Sunday, September 27, 2020 at 4pm. Total raised and prize winners will be announced.
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Copyright © 2014 Epilepsy Southwestern Ontario.
Charitable Registration No.: 11890-0802-RR0001


Epilepsy Southwestern Ontario
797 York Street, Unit 3 | London, ON, N5W 6A8 | Canada

Tel: 519.433.4073 | Fax: 519.433.4079
Windsor Tel: 519.890.6614
Chatham Tel: 519.365.5131

michelle@epilepsyswo.ca


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Epilepsy Southwestern Ontario · 797 York Street · Unit 3 · London, Ontario N5W 6A8 · Canada