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OBI hosting free public talk on brain health

January 31, 2014

The Ontario Brain Institute (OBI) is hosting a free public talk in downtown Toronto Feb. 7 which will be enriching for anyone interested in neurological conditions and brain health. The event will be largely focused on patient empowerment and self care for caregivers and will feature a presentation from brain-health expert Dr. Tiffany Chow.

Chow, a senior clinician-scientist at the Baycrest Rotman Research Institute and staff behavioural neurologist at The Sam and Ida Ross Memory Clinic, will deliver her presentation entitled Bringing Compassion into Lives with Neurological Disorders.

Aside from Chow’s presentation, which will be the first public talk the OBI has hosted, attendees will have the opportunity before the event to network with others and to meet people and companies who are developing tools to help people living with neurological conditions and their families.

“The best possible result from people attending this event would be for people who have been touched by a neurological disorder to walk away with greater perspective (about neurological disorders) and to have a stronger sense of community,” Carla Arasanz, the OBI’s ‎knowledge translation lead, tells Voices of Epilepsy.

“I think that goes a long way — knowing that others have gone through what they’re going through, so I think it will give a sense of hope.”

Arasanz says an added benefit of the public talk is that it has the capacity to raise awareness of epilepsy and the other neurological conditions.

OBI received $100-million five-year funding from the Ontario government in early 2012 to undertake research projects in five areas of brain health — epilepsy, cerebral palsy, developmental disorders, neurodegenerative conditions and depression.

Chow’s presentation will discuss these areas of brain health, while offering advice to patients on empowerment and familiarizing caregivers with concepts of compassion as well as the importance of self care.

“(Chow’s presentation will have) a focus on self-compassion so (caregivers) can care more successfully for patients,” Arasanz explains.

The event will be held Feb. 7 at MaRS Discovery District, 101 College St. The first 150 people who attend will receive a copy of Chow’s book, The Memory Clinic: Stories of Hope and Healing for Alzheimer’s Patients and Their Families.

People interested in attending the event can register by clicking here.

Writer: Deron Hamel

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca. You can also leave a comment below.

MEDICATION ALERT: Clobazam

January 28, 2014

January 27, 2014

Epilepsy Ontario has learned that there is a shortage of clobazam at some community pharmacies. Unfortunately, we do not have any further details at this time and we do not know whether the shortage is affecting a single brand of clobazam or if multiple brands are affected.

If you take clobazam we suggest that you contact your pharmacy and ask about the supply of your medication.

If your pharmacist is unable to fill your prescription contact your health care provider immediately. Do not make any changes to your treatment (i.e. skipping doses, reducing the dose, or discontinuing the drug) without consulting your health care provider. If there is a shortage of your anti-seizure drug your physician or nurse practitioner can discuss this with you and develop a treatment plan to most safely manage your epilepsy.

It would be very helpful if you share what you learn with us so we can track the situation and get a better picture of what is happening. Call us at
905-474-9696 or toll-free 1-800-463-1119, or send an email to

[email protected]

If you need any assistance, please let us know.

As of January 27, 2014 there was no information about a clobazam shortage ondrugshortages.ca, although we will continue to monitor this website for an update.

For additional information:

* Drug Shortage FAQ’s
Link: https://epilepsyontario.org/wp-content/uploads/2014/02/Drug-Shortages-FAQs.pdf

* Therapeutic Alternative to Clobazam: Medical Recommendation for Adults with Epilepsy (January 21, 2013)
Link to download:

https://epilepsyontario.org/wp-content/uploads/2014/01/Clobazam_Therapeutic-alternative-for-adults_Jan2013.pdf

Past articles:

January 31, 2013 Client-pharmacist relationship crucial for those with complex disorders during clobazam shortage

January 24, 2013 Alternative drug therapy, close physician contact recommended during clobazam shortage

January 17, 2013 National action plan could curb impact of drug shortages

January 10, 2013 Unable to get clobazam? Work with your doctor, pharmacisthttps://epilepsyontario.org/unable-to-get-clobazam-work-with-your-doctor-pharmacist/

Epilepsy Ontario publishing monthly column on Huffington Post Canada website

January 24, 2014

Stop the presses! Epilepsy Ontario is now running a monthly column on the Huffington Post Canada’s website focusing on issues surrounding seizure disorders as well as providing analysis from experts and stories from people of living with the neurological condition and their families.

The first column appeared Jan. 24 and was written by Gena Meldazy, an Epilepsy Ontario volunteer who came up with the idea to raise the profile of epilepsy through a regular column on the popular news website.

“I’m a firm believer that global epilepsy awareness can really be leveraged through the popular press — and the popular press can play a really important role in helping organizations get that message out,” she says.

“We want to bring epilepsy and neurological conditions into a space where we can talk about it in a common language.”

Meldazy had contacted Huffington Post Canada in October, and editors were open to the idea of a regular column dedicated to epilepsy issues.

The maiden column, Undiagnosed Epilepsy Made People Think I Was Acting Out, is Meldazy’s first-hand account of growing up with seizures. It’s also about the lack of information available for people with seizure disorders in the 1990s, how that contributed to her personal awareness of seizures and epilepsy, and why knowledge sharing is important.

Meldazy, whose background is in marketing and communications, has been volunteering with Epilepsy Ontario for about a year. She has focused on helping the organization with its communications agendas and saw the Huffington Post as an excellent channel to bring epilepsy awareness to a larger audience.

A column on the Huffington Post Canada’s website seemed like the perfect way to accomplish her goal on two fronts: the website is widely read and no one is writing a column focused on raising epilepsy awareness.

In fact, Meldazy says she’s not aware of any mainstream news media — online or print — that has a regular feature about epilepsy.

“There’s a sense of excitement on our end that this may be a first,” Meldazy says, adding that often when epilepsy is mentioned in mainstream media the messages contain inaccurate information.

“So, this is a really amazing opportunity to bring trusted experts and those knowledgeable sources on the topic to challenge the myths and stigma that affects day-to-day perceptions of what (epilepsy) is.”

Writer: Deron Hamel

[Event] OBI Public Talk: Taking Charge of your Brain Health

January 23, 2014

Please join us for the Ontario Brain Institute public talk: Taking Charge of your Brain Health. Opening remarks by Dr. Donald Stuss, President and Scientific Director of the OBI, followed by keynote speaker Dr. Tiffany Chow, behavioural neurologist and senior clinician-scientist at the Baycrest Rotman Research Institute. The title of Dr. Chow’s talk is “Bringing Compassion into Lives with Neurological Disorders”.

The event will be held at 7:00 p.m. on Friday, February 7^th 2014 in the Auditorium of MaRS Discovery District (101 College Street, Toronto, at Queen’s Park Subway Station, wheelchair accessible). Come early to enjoy some refreshments and interact with Ontario-based companies and entrepreneurs that are developing tools to help people with brain disorders and their families. Doors open at 5:30 p.m.

Admission is free. Registration is required through http://www.eventbrite.ca/e/ontario-brain-institute-public-talk-taking-charge-of-your-brain-health-tickets-10010063369. Tickets will be collected upon entrance.