Author Archives: Darryl

Navigating Back to School with Epilepsy: 10 Tips for Parents and Students

September 5, 2023

The beginning of a new school year can be an exciting yet challenging time for both parents and students, especially when epilepsy is part of the equation. As parents and caregivers, ensuring a safe and supportive environment for students with epilepsy requires careful planning and open communication with educators and school staff. Here are 10 valuable tips for parents and students to navigate the back-to-school transition smoothly and make the upcoming academic year a successful one.

  1. Open Communication is Key: When the school year starts, establish open lines of communication with teachers, school nurses, and administrative staff.
    • Inform them about your child’s epilepsy diagnosis, triggers, and any specific needs they might have.
    • Discuss seizure types, signs, and appropriate responses to ensure everyone is well-prepared.
    • Offer resources and training materials about epilepsy to teachers and staff. This can help them better understand the condition and how to respond effectively.
    • Inform the school immediately of any changes in your child’s health or medication regimen.

  2. Create an Epilepsy Action Plan: By creating a well-documented epilepsy action plan, you empower school personnel to respond effectively in case of a seizure and provide your child with a safe and supportive learning environment. This plan is a critical tool in ensuring your child’s health and well-being at school.
    • Begin by working closely with your child’s healthcare provider, such as a neurologist or epileptologist, to create a personalized epilepsy action plan.
    • Describe your child’s specific seizure types, triggers, including any distinctive characteristics and how long they typically last.
    • List all current medications, including names, dosages, and administration schedules. Ensure this information is kept up-to-date.
    • Share emergency contact information, including your contact details, your child’s doctor’s information, and any other relevant contacts.
    • Provide step-by-step instructions on how to respond if your child experiences a seizure. This should include:
      • What to do if a seizure occurs during class or elsewhere on the school premises.
      • Whether or not to administer rescue medications, and if so, detailed instructions on how to do so.
      • When to call 911 or seek immediate medical assistance.
      • How to provide comfort and support during the postictal phase (the period after a seizure).
    • Ask your child’s school administration about a Plan of Care document under the Ontario government’s PPM 161 memorandum

  3. Develop a Seizure Response Team: Identify key individuals who will be responsible for responding to seizures at school. This may include teachers, school nurses, and even fellow students who are aware of your child’s condition and how to offer assistance when needed. Encourage the school to designate a point of contact or liaison for matters related to your child’s epilepsy. This person can help coordinate efforts and ensure that all staff members are aware of your child’s condition.

  4. Educate Teachers and Peers: Arrange an informative session with your child’s classmates and teachers about epilepsy. Demystifying the condition can reduce stigma and foster a more inclusive environment. Use this opportunity to clarify any misconceptions and answer questions.

    The training should cover various aspects, including understanding different types of seizures, knowing when to administer rescue medications (if applicable), and providing comfort and support during and after a seizure. Depending on the age and maturity of students, consider involving peers in the response team. Educate these students about epilepsy and how to offer support and understanding to their classmate during and after a seizure. Learn more about Epilepsy Durham Region’s comprehensive classroom and school staff presentations.

  5. Promote Self-Advocacy: Teach your child about their epilepsy and how to advocate for themselves. Encourage them to communicate their needs to teachers and peers, while also knowing when and how to ask for help if they experience any symptoms or difficulties.

    Promoting self-advocacy empowers students with epilepsy to take an active role in managing their condition and communicating their needs effectively. Here’s a more detailed explanation of why this is important and how to encourage it:
    • Foster open communication between the student and their teachers. Encourage them to discuss their epilepsy, triggers, and any necessary accommodations.
    • Teach them how to express their needs and preferences in a respectful and assertive manner. This includes asking for extra time on assignments, requesting seating away from potential triggers, or explaining their medication schedule.
    • Ensure that the student knows the steps outlined in their epilepsy action plan. Teach them how to communicate these steps to teachers, school nurses, or peers in case of a seizure.
    • Stress the importance of seeking help promptly when needed.

  6. Medication Management: If your child takes epilepsy medications, work with the school staff to ensure they’re administered correctly and on time. Provide clear instructions and any necessary medication, along with emergency contact information.

  7. Prepare for Special Circumstances: Discuss strategies with the school for managing situations such as field trips, physical education classes, and extracurricular activities. Make sure your child’s needs are accommodated during these times as well.

  8. Seizure-Proofing the Environment: Collaborate with the school to create a safe classroom environment. Discuss potential seizure triggers and ensure that any hazardous objects or obstacles are removed. If your child is photosensitive, consider addressing classroom lighting.

  9. Encourage Emotional Support: The emotional well-being of a student with epilepsy is crucial. Offer them a safe space to express their feelings and concerns. Consider connecting them with support groups or counselling services if needed.
    • Provide educational resources about epilepsy for the student and their classmates. A better understanding of epilepsy can lead to more empathy and support from peers.
    • Emotional support is a critical component of a successful transition back to school for students with epilepsy. It helps them manage the psychological and social aspects of living with epilepsy.

  10. Regular Check-ins: Throughout the school year, stay in touch with teachers and school staff to monitor your child’s progress and address any emerging issues. Regular communication ensures that everyone remains informed and can make necessary adjustments if required.
    • Plan and schedule regular meetings between the student, parents or guardians, teachers, and school staff. These meetings can be held monthly, quarterly, or as needed based on the student’s specific situation.
    • Collaborate with teachers to identify areas where additional support or accommodations may be needed.
    • Collaborate with the student to set academic and personal goals for the upcoming months. Encourage them to outline steps they can take to achieve these goals.
    • Keep detailed records of each check-in, including the topics discussed, decisions made, and action items. This documentation helps track progress and ensures accountability.

Navigating back to school with epilepsy requires collaboration, planning, and open communication between parents, students, and school staff. By following these tips and fostering a supportive environment, parents can help their children thrive academically and emotionally while managing their epilepsy. Remember, a well-prepared and educated community can make a significant difference in ensuring the success and well-being of students with epilepsy.

We’re Hiring – Epilepsy Durham Region to hire a Fund Development & Community Engagement Lead for 12-month contract

July 14, 2023

12-month contract starting Aug 21st, 2023 with possibility of extension.

Part time: 24-30 hours/week

Epilepsy Durham Region is seeking a dynamic Fund Development and Community Engagement Lead to build agency capacity by growing existing events, creating and implementing new events, and evolving our current fundraising practices.

The Fund Development and Community Engagement Lead is responsible for evolving our current signature fundraising event, identifying, and executing new fundraising opportunities and events, and diversifying agency revenue streams. The successful candidate must be local to Durham Region in order to facilitate community relationships and the events themselves.

Major Duties / Responsibilities

  • Create, execute, and launch a new fall/winter event (2023)
  • Create short-term and medium-term strategy for event-growth, with a long-term plan for scaling up our events – implement strategies accordingly
  • Create, execute, and launch two (2) new events in 2023/2024, as well as engage in current signature event with year-long engagement
  • Identify and execute fundraising opportunities/events for spring 2024
  • Build community partnerships with potential sponsors, teams, third party fundraisers, etc.
  • Work alongside Communications Specialist to enhance fundraising through online engagement to raise Epilepsy Durham Region’s profile and social media presence
  • Identify and secure additional revenue streams
  • Manage donor development and donor stewardship
  • Build a database of supporters and members, regular donors and mailing list
  • Manage project budgets

Education / Experience

Post-secondary degree in a related area or equivalent experience – e.g. Event Management, Business Development, Fundraising ManagementPhilanthropy, Digital Event Strategist. Experience and knowledge directly related to the essential job functions must be defined in cover letter.

Ideal Candidate

  • Proven track record in fund development with a focus on securing major gifts, and corporate sponsorships.
  • Minimum three years related professional experience
  • Demonstrated ability to work with stakeholders and the public
  • Caring and compassionate by nature
  • Excellent interpersonal, communication, and diplomacy skills
  • Strong written and verbal communication skills
  • Organized, self-directed with the ability to work well alone and as part of a team
  • Demonstrated organization skills and the ability to effectively multi-task and triage
  • Creative thinker and problem solver
  • Highly focused on attention to detail
  • Strong time management and administrative skills including planning and evaluation, budgeting, scheduling, project management, and assessment.
  • Understanding and respect for diversity and those with disabilities
  • Demonstrated knowledge in working with individuals that are part of a vulnerable community or are living with a chronic health condition
  • Schedule flexibility based on events and engagement opportunities (e.g., evenings and weekends when required)
  • Familiarity with non-profit operations, fundraising software, and donor management systems is preferred, but not a requirement

About Epilepsy Durham Region

Epilepsy Durham Region is a not-for-profit, charitable agency dedicated to improving the quality of life for those living with epilepsy or seizure disorders and those closest to them through support services, education, advocacy, and on-going public awareness. The agency provides services to those affected by epilepsy in all eight municipalities of Durham Region including Ajax, Pickering, Whitby, Oshawa, Clarington, Township of Scugog, Township of Uxbridge, and Brock Township.

How to Apply

Epilepsy Durham Region is committed to diversity and providing an inclusive workplace. It is our priority to ensure employment opportunities are visible and barrier-free to all under-represented groups including but not limited to, Indigenous, Black and racialized groups, people with disabilities, women and people from the 2SLGBTQIA community.

If you require an accommodation during the recruitment process, please let us know by contacting our confidential inbox director@epilepsydurham.com.

Please submit your CV and a cover letter highlighting why you’re the best candidate for this position to director@epilepsydurham.com by 4:59 pm EST on Friday, August 4th, 2023.

The Ripple Effect: Understanding How Epilepsy Affects the Whole Family

July 9, 2023
Impact of epilepsy on the family

Epilepsy, a neurological disease characterized by recurring seizures, not only impacts the individual diagnosed but also has far-reaching effects on their entire family. From emotional challenges to lifestyle adjustments and financial burdens, the ripple effect of epilepsy extends beyond the person experiencing seizures. In this blog post, we delve into the profound impact epilepsy has on families, shedding light on the often overlooked aspects of this condition.

  1. Emotional Roller Coaster:
    Epilepsy introduces an emotional roller coaster ride for both the person diagnosed and their family members. Seizures can strike at any time, leading to a range of emotions such as fear, worry, and anxiety. Witnessing a loved one experiencing a seizure can be a distressing and traumatic experience, leaving family members feeling helpless and concerned for their well-being. Managing these emotions and providing ongoing support becomes an integral part of their lives.
  1. Constant Vigilance:
    Living with epilepsy requires constant vigilance, and family members often find themselves on high alert. The unpredictability of seizures means that loved ones must always be prepared to provide immediate assistance and ensure a safe environment. This heightened state of alertness can be mentally and emotionally draining, as they are always anticipating and adapting to the needs of their family member with epilepsy.
  1. Lifestyle Adjustments:
    Epilepsy necessitates adjustments in everyday life for the entire family. Triggers that may provoke seizures, such as forgetting to take medication, stress, lack of sleep, flashing lights or certain foods, need to be avoided. Routines may need to be modified to accommodate medical appointments, medication schedules, and potential recovery periods. Additionally, creating a safe and supportive environment becomes paramount, which may involve making changes to the home or considering additional safety precautions. These adjustments require patience, understanding, and flexibility from everyone involved.
  1. Financial Burden:
    The financial implications of epilepsy can be significant for families. Medical expenses, including travel to doctor visits and anti seizure medications, can quickly accumulate. Furthermore, specialized treatments, therapies, and assistive devices may be necessary, all of which can strain a family’s financial resources. Additionally, epilepsy may affect the ability of the person diagnosed to work, leading to a loss of income. Balancing the financial burden while ensuring the best possible care for their loved one with epilepsy becomes a juggling act that families must navigate.
  1. Mental Health Impact:
    Epilepsy has a profound impact on the mental well-being of both the person diagnosed and their family members. Coping with the challenges of epilepsy, such as the fear of seizures, the stress of constant vigilance, and the uncertainty of the condition, can lead to increased levels of stress, anxiety, and depression. Family members may experience feelings of guilt or helplessness, and their own mental health can be compromised as they strive to provide unwavering support. It is essential to prioritize mental well-being and seek professional help when needed, fostering open communication within the family and creating a support network to navigate these challenges together.

Epilepsy is a disorder that reaches far beyond the individual affected, affecting the entire family unit. Understanding the profound impact epilepsy has on families is crucial in fostering empathy, support, and a more inclusive society. By acknowledging the emotional roller coaster, constant vigilance, lifestyle adjustments, financial burden, and mental health challenges faced by families, we can extend a helping hand and create a community that uplifts and supports each other.

If you or someone you know is living with epilepsy or supporting a loved one with epilepsy, remember that you are not alone. Reach out to us at Epilepsy Durham Region, we have a caregiver support group that may be of interest. There are also other epilepsy support groups, healthcare professionals, and online communities to connect with for guidance and resources. Together, we can raise awareness, advocate for affordable healthcare, and provide the understanding and support that families affected by epilepsy truly deserve.

Great Canadian Giving Challenge

June 1, 2023

Every $1 donated in June is a chance for Epilepsy Durham Region to WIN!*

Are you ready to make an impact in the fight against epilepsy? This June, you have the power to make a real difference by joining the Great Canadian Giving Challenge! By donating to our charity for epilepsy awareness, you’ll be helping us to raise critical funds to support individuals and families affected by this condition.

Epilepsy is a serious neurological disease that affects thousands of people across Durham Region. 1-in-100 people have epilepsy, in fact. It can cause seizures, cognitive impairment, and a host of other challenges that can impact every aspect of a person’s life. But with your help, we can provide resources and support to those who need it most.

Donating to our charity is easy and secure, and every dollar counts. With the Great Canadian Giving Challenge, your donation could even help us win a $20,000 prize to further our mission! So don’t wait – seize this opportunity to make a real difference in the lives of those affected by epilepsy. Join the Great Canadian Giving Challenge today and help us spread awareness and support for this important cause.

It’s easy to join the Great Canadian Giving Challenge!
To get started, click the Donate Now button to be taken to the CanadaHelps Donation form.

DONATE NOW

Terms & Conditions

* Donations must be made via www.CanadaHelps.org. Minimum $3 donation required. Eligible Charities will automatically receive one (1) entry for each dollar donated to the Eligible Charity through CanadaHelps.org, including the CanadaHelps direct site for Canadians, customizable donation pages, P2P, events and other campaign pages created by a registered Canadian charity using the CanadaHelps system, and monthly donations processed during the challenge period (each, an “Entry” or collectively, “Entries”). Contest runs from June 1, 2023 at midnight Newfoundland Daylight Time (NDT) to June 30, 2023 at 11:59:59 p.m. Pacific Daylight Time (PDT). See full rules at: https://www.canadahelps.org/en/givingchallenge-rules.

Understanding Epilepsy and Mental Health during Mental Health Awareness Month

May 24, 2023

Each year, Canadians recognize May as Mental Health Awareness Month. It is a time to educate ourselves about mental illnesses and the many impacts they can have on a person’s life. Epilepsy itself is not a mental illness, however studies show that individuals living with epilepsy have an increased incidence rate of many mental health illnesses including depression and anxiety.

  • It is estimated that the prevalence of depression in association with epilepsy is as high as 55% 1
  • Studies suggest 33% of people with epilepsy recall having encountered enacted stigma/bullying while 90% admit to experiencing felt stigma 2
  • Prevalence of suicide ideation among people with epilepsy ranges from 2.5 to more than 7 times that of the general population, with a rate of completed suicide of more than 30 times the global estimated rate 3
  • Up to 25% of people with epilepsy live with a generalized anxiety disorder 1

It can be difficult to understand whether mental health impacts on individuals with epilepsy are based on how epilepsy affects their life, or more directly how their brain is affected by seizures. While it can be hard not to focus on the ‘why’, we encourage individuals facing mental health challenges to focus on steps to help manage their symptoms. Here are some strategies that may be helpful for people with epilepsy facing mental illness and mental health challenges:

Reach out to your local Community Epilepsy Agency: Many local agencies offer programs and services directly related to mental health challenges and epilepsy including Cognitive Behavioural Therapy based programs and counselling. If your local agency is not currently providing the appropriate programming, they may be able to direct you to another epilepsy agency that is, or other mental health resources in your community. (Click here to find your local agency in Canada)

Never underestimate the power of a support group or peer-to-peer support: Living with epilepsy can be incredibly isolating; support groups offer a safe environment to share challenges, fears, triumphs and more.

Journal about more than just your seizure activity: It is important to track seizure frequency for many reasons, but it is also incredibly important to pay close attention to your day to day mood, behaviours, and quality of life. Share details about your mental health with both your general practitioner, as well as the specialist managing your epilepsy.

Know that you are not alone: Please connect with Epilepsy Durham Region if you have any additional questions.

Please note, if you are concerned about your mental health, please consult your doctor as soon as possible. If you or someone you love is in crisis, please connect with your local crisis centre (Durham Region: Durham Mental Health Services – Crisis Response | 1-800-742-1890).

  1. Jackson, M J., and D Turkington. “DEPRESSION AND ANXIETY IN EPILEPSY.” Journal of Neurology, Neurosurgery & Psychiatry, 2005, https://doi.org/10.1136/jnnp.2004.060467.
  2. “Epilepsy: A Public Health Imperative.” WHO International, 13 Jun. 2019, www.who.int/publications/i/item/epilepsy-a-public-health-imperative.
  3. “The Black Dog in Your Waiting Room: Screening for Depression in People with Epilepsy.” EPIGRAPH, vol. 21, no. 4, 2019, https://www.ilae.org/journals/epigraph/epigraph-vol-21-issue-4-fall-2019/the-black-dog-in-your-waiting-room-screening-for-depression-in-people-with-epilepsy

Epilepsy Durham Region wants to hear from YOU!

May 24, 2023

At Epilepsy Durham Region, we value the feedback of all the individuals and families that connect with our organization for supports and services. We would like to hear how you think we are doing. Please complete the short survey below to help us learn how we can continue to improve.

Epilepsy Durham Region’s 2023 AGM: Community Connect Segment

May 16, 2023

Our Annual General Meeting (AGM) brings together members of Epilepsy Durham Region to recap the previous year’s accomplishments, discuss future goals, and elect officials. For this year’s AGM, we invite you to participate in the Community Connect Segment. The keynote speaker will be Doug Smith, the General Manager of Solutions for Microsoft Canada, speaking about his journey with epilepsy.

We are honoured to welcome Doug Smith as our keynote speaker for our AGM. Mark your calendars for Tuesday, May 30th at 6:00 pm to participate in this virtual event and be inspired by his story. If you’re interested in more information, please email us at info@epilepsydurham.com.

Doug is responsible for leading a world-class team of Microsoft cloud and product technology specialists, and he also lives with epilepsy. Doug will share his experience with epilepsy and how he overcomes the various challenges that are involved. Be prepared to hear insightful and encouraging stories of how he refuses to let epilepsy hold him back and instead uses it as fuel to propel him forward in life.

Doug Smith highlights the importance of awareness and advocacy for individuals who have epilepsy. He encourages people to view epilepsy not as a hindrance but rather as an opportunity to create a more inclusive society that values diversity and empowerment.

His personal stories and experiences are a testament to his strength and resolve, providing a shining example of overcoming adversity. Doug’s story of resilience and determination serves as an example to us all that even in the face of challenge and adversity, we can overcome and achieve our goals. We are grateful for his participation in our event.

Volunteer Appreciation Spotlight: The Douglas Family

May 2, 2023

As we wrap up national Volunteer Appreciation month, Epilepsy Durham Region has taken some time to reflect on what our volunteers mean to our effectiveness, the support we are able to provide, and ultimately the overall success of our organization. As a small staffed non-profit, Epilepsy Durham Region knows that we would not be where we are without the dedication, passion, and kindness of our volunteers. Simply put, volunteers are the backbone of Epilepsy Durham Region, helping it to thrive, have its heart shine through and its mission delivered, and we would like to take some time to highlight the commitment of a local family that personifies the goodwill, motivation, and philanthropy of volunteerism – the Douglas family.

Epilepsy Durham Region could not be more grateful for our connection to the Douglas family – Cris, Robyn, Ryan, Matt, and Kyle. Their generosity is equally matched by their upbeat energy, and innovation. No matter the initiative, event, or ask, members of the Douglas family are first in line to offer advice, skill sets, time, and a hand. They have played a pivotal role in Epilepsy Durham Region launching new, successful events, and offer a sounding board as we look to strengthen our organizational goals and direction. Most recently, their kindness has been felt in a huge way as we have adapted to recover from the pandemic and our transition away from our office space; with every turn they offer their support, space when we need it, and even the boxes to house our belongings.

The Douglas family motivation, drive, and commitment to community is unparalleled and the impact of their generosity is seen in the success of our programs, and the faces of the families with epilepsy that we help. Here is the amazing part – their volunteerism doesn’t stop with Epilepsy Durham Region. You can find a member of the Douglas family attached to so many amazing causes throughout Durham Region. Whether they are chairing a Board of Directors or committee, or riding their bikes for entire days at a time to raise much needed funds, they are always looking for new ways to be helpful.

It is hard for Epilepsy Durham Region to find words to portray how grateful we are to know the Douglases, but it is safe to say that we consider them family and feel forever indebted to the altruism that the Douglas family exemplifies.

Seizing Hope

February 28, 2023

A Short-Film Documentary Screening

In partnership with Durham College, Epilepsy Durham Region is hosting a short-film screening event for the mini-documentary, “Seizing Hope – High Tech Journeys in Pediatric Epilepsy”.

Please join us and the Durham College Epilepsy Association to watch the 30 minute short film, and a short panel discussion followed by a Q & A.

This screening event is the perfect opportunity to learn, connect with others, and celebrate Epilepsy Awareness Month!

Friday, April 21st, 2023 | 6:00 pm

Please register by April 14th, 2023 to reserve your spot!

Location: 2000 Simcoe Street North, Oshawa

The Center For Collaboration and Education (CFCE Building) | Global Classroom

Film Synopsis

This mini-documentary is a story about hope for children and their families in mitigating and treating pediatric drug resistant epilepsy (DRE). It is a story about how families learn to trust their medical team, educate them, and help them consider neurotechnology options for their child. It is a story about empowerment as loved ones shed light on the ethical factors that led to their decisions. In doing so, they empower other families that face similar challenges to theirs. 

It is a story of how children and families affected by DRE can seize hope in times of darkness for a better quality of life. 

EPILEPSY DURHAM REGION HAS MOVED OUR OFFICE LOCATION

February 24, 2023

Epilepsy Durham Region has made some BIG changes!

In light of changes put in place as a direct result of COVID-19 and public health recommendations throughout 2020-2021, Epilepsy Durham Region has made the decision to leave our physical office location in Whitby. Epilepsy Durham Region loved calling the Town of Whitby our home for over a decade, but are excited for our new setup and what the future holds. Our Team will continue to work in a hybrid environment, providing service to our community in both a virtual and in-person capacity.

We thought we would take some time to explain these new changes, and what they mean to our clients. Here are the facts:

Epilepsy Durham Region can still be reached at the same contact information

Our telephone number remains the same (905.430.3090), and we are happy to continue to return your calls within 5 business days.

Our email addresses also remain unchanged. If you are looking to connect with Epilepsy Durham Region staff, please do so using info@epilepsydurham.com, use the general inquiry form on our website, or visit the ‘About Us’ page on our website for specific email addresses for our team members.

Changes to our physical address DOES NOT mean changes to our programs and services

Epilepsy Durham Region is proud to continue offering all of our programs and services in the same capacity, even with the change in our physical location. We continue to access our programs and services, and look for new service delivery models to ensure our programs are accessible and run as effectively as possible to meet our client needs.

Interested in what programs are a good fit for you? Please email: info@epilepsydurham.com

We have a new MAILING address

If you are looking to mail something to Epilepsy Durham Region, please note that our new address is as follows:

Epilepsy Durham Region PO Box 1, STN Main
67 Brock St. W. Uxbridge, ON L9P 1M6

**Please note, this is a mailing address only, and Epilepsy Durham Region Team members do not provide service at this location – it is not a drop in facility.

We still LOVE to see you in person

The Team at Epilepsy Durham Region loves the opportunity to connect with our clients in person. If in-person meetings are best for you, please work with an Epilepsy Durham Region Team member to schedule an appointment for an in-person meeting. Please note, in-person meetings are to be booked a minimum of one week in advance.

We would like to extend a very special thank you to the amazing staff at CRCS-DKI and the Douglas family, and the volunteers that helped to make our move as smooth as possible. And a big thank you to YOU for your patience as we adapt to our new transition.