Epilepsy Ontario is disappointed to see no dedicated funding for epilepsy education and support programs in this year’s provincial budget announcement. Epilepsy Ontario and Community Epilepsy Agencies across the province have pushed to include core program funding as part of this year’s budget.

The need for education and support program funding was the key message at this year’s Queen’s Park Action Day and hundreds of members of the epilepsy community sent letters to the Ministers of Health and Finance showing their support. Building on the success of Epilepsy Southwestern Ontario’s Clinic To Community program in measuring the real impact epilepsy education programs can have, the proposal recommended $3-millon in funding for staff to provide epilepsy education and a further $1-million for on-going support. The funding would have helped increase education and support program capacity, particularly in parts of the province that are struggling with few community epilepsy resources.

However, the budget did include funding for Team-Based Interprofessional Health Care programs. While the details of this program are not specific, we will call on the Minister of Health to ensure that epilepsy education and support programs, through Ontario’s Community Epilepsy Agencies, be included as part of this program.

Ontario’s Community Epilepsy Agencies currently provide epilepsy education and support programs with no core funding from the government. By helping fund epilepsy education and support programs, the province could help raise support levels across the province, particularly in areas of Ontario with no community staff, with programs that make a real impact in the live of people living with epilepsy and reduce unnecessary hospital usage.

Epilepsy Ontario and Community Epilepsy Agencies across the province will continue reaching out to MPPs and candidates in the coming election, to ensure they understand the importance of community education and support resources, and the need for a provincial investment in those resources.

by Sean O’Malley

Last year on Purple Day, Epilepsy Ontario announced it was funding the first research clinical study in Canada to look at the intriguing possibility that music therapy could play a role in seizure reduction.

With Purple Day upon us again, that study, conducted at the Krembil Neuroscience Centre at Toronto Western Hospital, is now well under way.  Under the direction of renowned epilepsy neurosurgeon Dr. Taufik Valiante and post-doctoral fellow Marjan Rafiee, the study will compare the seizure profiles of individuals with epilepsy before and after listening to Mozart’s K 448 sonata.

Previous international epilepsy music therapy studies have found evidence of seizure reduction by as much as 24 per cent, which compares favorably to some of the most commonly used drug interventions.

It will be at least another year before we can report the results, so in the meantime, we thought we would have some fun with the intersection of science and music.

That’s where the Rhiannon Project comes in.

Rhiannon, 22, is a young Ontario woman with drug-resistant epilepsy whose love of music was the inspiration for getting this study funded.

She was even named after a song, the one of the same name by Fleetwood Mac.

I know that because I am the one who named her. Rhiannon is my daughter.

Ever since she was little, Rhiannon would crave music at all times in a way that I came to feel was her own form of self-medication. One of our favourite rituals is to go for drives along the shores of Lake Simcoe where we live and listen to our favourite music.  No matter how hard a day she seems to be having with seizures, those drives always feel like an oasis of relative calm in her brain.

So in the interest of popular science, we convinced Marjan, who loves music as much as we do, to conduct a little experiment with Rhiannon and I. One day earlier this month, Marjan had us both hooked up to an EEG monitoring unit and recorded our brain activity while listening to music.

Like the participants in the formal study, Rhiannon and I listened to the Mozart sonata.

Then we listened to the kind of musi c we play on our lake drives. Inspired by the best-selling books “This is Your Brain on Music” and “The World in Six Songs” by Montreal neurologist Dr. Daniel J Levitin,  Rhiannon and I each came up with a list of our six favourite songs…ever.

If you love music as much as we do, that’s really hard to do. My list of honourable mentions of songs that did not make the top six goes on and on.

Which is where the Rhiannon Project begins.  In the months ahead, as Marjan completes the EEG analysis, (and explains it to me in a way I can understand), I will document what our brains were like on music, while explaining the role music therapy is playing in this golden age of research into the brain in a variety of clinical settings.  For people with Alzheimer’s and Dementia, music therapy is helping unlock ancient memories once thought to be gone forever. For people with Parkinson’s, it is helping with motor-neuron skills.

As part of the Rhiannon Project we invite everyone in the epilepsy community, including loved ones and friends, to be a part of the conversation about the role music therapy can and does play in our lives.

As a person with epilepsy, do you feel a connection to music like Rhiannon and I do?  Does the idea of music having healing properties make sense in your own life?

Then we have a simple challenge for you. Let us know what your world in six songs is – your’re favourite six songs…ever.

Let us know here on our website, on our Facebook page, on Twitter with the hashtag #EORhiannonProject, or you can email me directly at [email protected] or @seanomalley32

Let’s make this a communal conversation about our love of music and our hopes that clinical research like this will lead to a better understanding of epilepsy and the brain.

As an added bonus, we will randomly select one participant in the Rhiannon Project to come into our music lab so we can show them what their brain looks like on music.

My World in Six Songs: Let It Be (The Beatles), Gimme Shelter (Rolling Stones), Stairway to Heaven (Led Zeppelin), Born To Run (Bruce Springsteen), London Calling (The Clash), Nightswimming (R.E.M).

Rhiannon’s World in Six Songs: Royals (Lorde), American Idiot (Green Day), New Orleans is Sinking (The Tragically Hip), Never Ever Getting Back Together (Taylor Swift), Self-Esteem (The Offpsring), Mr. Bright Side (The Killers)

Want to learn more about the epilepsy music therapy study and find out if you are eligible to enroll?

Are you an adult individual with drug-resistant epilepsy? Are you interested in contributing to a clinical research study about the potential benefits of music therapy in reducing seizure frequency? If so, you may be eligible to participate in our clinical research study – The Rhyme and Rhythm of Music in Epilepsy – at the Toronto Western Hospital, sponsored by Epilepsy Ontario and in partnership with the Krembil Research Institute. You may qualify if you have tried a number of anti-seizure medications without complete seizure control, and you can not benefit from other common treatment options, including surgery, ketogenic diet, vagus nerve stimulation (VNS), and deep brain stimulation (DBS). For more information on the study and the eligibility criteria please visit this site