Coordinator’s Commentary - vepc.bc.cavepc.bc.ca/public/AUGUST_Brainwave_2014.pdfcolor.pdfmay not be advisable due to [the] lack of information on safety and efficacy [of marijuana

Contact202-1640 Oak Bay AvenueVictoria BC V8R 1B2Phone: 250-475-6677Fax: 250-475-6619Email: [email protected]: www.headwayvictoria.com

Inside... Coordinator’s Commentary 2

Vol. 34, 2014

Antihistamine Use and Seizures 3

Treatment Updates 4

Reducing Risk for SUDEP 5

What’s Happening at HeadWay 6-7

What’s New in the Library 8

Epilepsy and Bone Health 12

Goodlife Charity Marathon 12-13

Drug Shortages 14

From the Executive Director 15

New Definition of Epilepsy 2014

In 2005, the following definition for Epilepsy was provided:-“a disorder of of the brain characterized by an enduring predisposition to generate epileptic seizures” (Fisher et al., 2014).

Recent revisions to this definition come as a result of input from the International League Against Epilepsy (ILAE) task force. The proposed revisions support the need for effective diagnosis and appropriate treatment. The task force therefore propose that epilepsy be considered a disease (vs. disorder) of the brain defined by ANY of the following conditions: (1) At least two unprovoked (or reflex) seizures occurring more than 24 h apart; (2) one unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years; (3) diagnosis of an epilepsy syndrome.Full article: http://www.ilae.org/Visitors/Centre/documents/Definition2014-RFisher.pdf

Page 2 The Transmitter, Volume 34, August 2014

Coordinator’s CommentaryHello Everyone!I am so pleased to be involved with this organization as the temporary Epilepsy Program Coordinator for the 2014-2015 fiscal year during Jenn Morgan’s maternity leave. There has been a lot to learn (and continues to be), but I have come to the position with an openness and an eagerness to serve the epilepsy community.

It is wonderful to see all the ways in which HeadWay is involved in promoting awareness in the community. I am new to the world of epilepsy, although I did work as a hospital medical ward social worker for several years and am no stranger to Program Coordination. I was among those who did not previously know the numbers associated

with how many individuals are impacted by epilepsy in their lifetime. Being involved in this new role has given me an opportunity to educate those in my circles on the numbers, debunk old seizure first aid methods, the different kinds of seizures and how to be an ally to those who experience seizures. Sporting my beautiful purple epilepsy bracelet regularly assists in beginning conversations and getting the word out there. I feel inspired on a daily basis by the stories I witness and am involved with. I am privileged to be a support to people who are impacted by epilepsy in the variety of different ways it touches their lives. Helping people through the challenges they face as a result of this seizure disorder and sharing in their triumphs is a true pleasure.

I am thrilled to be living back in this beautiful city and spending time with close friends that I moved away from a couple of years ago. I lived here previously to complete my schooling at the University of Victoria and was disappointed to leave. I’m glad I kept the dream alive to one day move back and now it has come true! I have since left family and other close friends on the mainland behind, and am actively working toward convincing all of them to move here to the island!

The pace of life here, the size, the water, and the fact that it’s summer, I couldn’t ask for more. I find that the water has such a therapeutic element to it and try to visit the ocean regularly. I love the warm weather, getting out and being active as often as possible - not to mention the abundance of sweet berries and fruit, yummy! Aside from all of that, I like to read, laugh, and cook. Another interest of mine is music and I love to listen to live music. I was lucky enough to attend a number of jazz festival events in June and will be going to a couple of local summer music festivals. I have learned over the years that finding a balance is key and I strive toward making this a reality in my life. Vocalizing my needs and assessing what is really important to me helps in achieving this goal.

Thank you for welcoming me to the position and your patience as I have begun to get immersed in the work. I feel very privileged and thankful to be in involved with the agency and serving you. To those of you I have yet to meet, please give me call, send me an email, or stop by the office. I would love to connect with you! Until then,

Sonya

The Transmitter, Volume 34, August 2014 Page 3

Antihistamine use and increased risk of seizuresFor many, the increasingly warmer weather creates the added challenge of living with seasonal allergies. Itchy, watery eyes, runny noses, wheezing and constant sneezing, can leave you feeling miserable and in search of relief. For individuals living with epilepsy, the use of antihistamines for allergy relief, is often not advised due to the increased risk for seizures. This is something that is not always readily understood considering their availability. Afterall its only prescription drugs we need to be concerned about right?

Generally, we recommend individuals who are taking anti-epileptic drugs (AED’s) to seek guidance from their healthcare professional before taking any new medications; over the counter (OTC) or prescription. This is because there are many medications that can increase the risk of seizures, antihistamines being one of them. However, some of the newer antihistamines such as loratadine [Claritin] and fexofenadine (Allegra) have a slightly different formula because of this, it is absorbed differently, offers fewer side-effects, and makes it less likely to cause seizures. However, seizures activity has still been reported when taking these antihistamines and therefore, it is important to consult with your healthcare provider. Talking with your healthcare professional will help to determine what your available options are. He/she will take into consideration the type of seizures you have and the amount of time since your last seizure, in order to determine the level of risk.

Tips for reducing or preventing allergy symptoms before they occur:

Avoid using window fans to cool rooms, because they •can pull pollen indoors.Close windows at night to reduce allergens while you •are sleepingConsider purchasing an air purifier with a filter •designed to reduce pollen, dust mites and other allergens.Keep windows closed when driving, using the air •conditioner if necessary, to avoid allergens.Limit your time outdoors when ragweed pollen counts •are highest — from mid-August until the first frost.


At the Victoria Epilepsy and Parkinson’s Centre we get a lot of questions and requests for information related to different hot topics, one being the subject matter of medical marijuana. You may ask yourself, how does HeadWay approach medical marijuana as a treatment for epilepsy? We are in the fortunate position of possessing working relationships with different local neurologists. Our approach aligns with theirs as well as with the stance the American Epilepsy Society (AES) takes (see below for key points outlined in a recent report they published).

“Healthcare professionals, patients, and caregivers are reminded that use of marijuana for epilepsy may not be advisable due to [the] lack of information on safety and efficacy [of marijuana use for the treatment of seizures].

“At present, the epilepsy community does not know if marijuana is a safe and effective treatment nor do we know the long-term effects that marijuana will have on learning, memory and behavior, especially infants and young children. This knowledge gap is of particular concern because both clinical data in adolescents and adults and laboratory data in animals demonstrate that there are potential negative effects of marijuana on these critical brain functions”.

“AES urges all people touched by epilepsy to consult with an epilepsy specialist and explore the many existing treatment options, so that they can make informed decisions with their specialist that weighs the risks and benefits of the different treatment options”.

Updated February 28, 2014 www. AESNET.org

Treatment Updates

The May parent workshop was met with an overall positive response. With help from Eisai Canada Incorporated, we are able to offer this informational workshop for parents. The Charro Foundation also gave us a generous donation to purchase, “Growing up with epilepsy: A practical guide for parents” by Lynn Bennett Blackburn, PhD that will be distributed to each parent who participates. Some minor adjustments will be made to continue improving the workshop in order for it to be as useful for parents as possible. Surveys will be sent out to parents prior to in order to gauge the parent’s understanding of seizures and to inquire about topics they would like weight placed upon during the workshop. Next workshop dates: October 25/2014 and January 17th, 2015Cost: 10.00Registration: Contact Sonya Dhudwal to register 250-475-6677

Here’s what one of our past attendees had to say:

“I find that this information will be very useful and provide me with guidance in the future, I will be more at ease with my child’s seizures”.

Parent Workshop


Soaring Above Epilepsy Kite Festival – A great success!

Thank you to all of our dedicated volunteers who helped with the 2 day kite festival that took place at Clover Point on May 31 and June 1! We appreciate the support you showed for children, families and adults living with epilepsy while helping to make our community an even more welcoming place to grow up! And thank you to our spokesperson, Tessa Hawkins for speaking at the Kite Festival Launch at the Bay Centre. Your words were so inspiring and painted a very realistic picture of what it is like to live with epilepsy.

We were able to reach so many festival goers with your help! An impressive number of seizure first aid cards were distributed- 875 to be exact. Too many people still think that a putting something

in an individual’s mouth when they are experiencing a seizure is an appropriate intervention, when in fact it is extremely dangerous and can cause serious damage. With your help, we were able to combat this incorrect myth and hopefully reach many more as a result of this.

Here is what Roxeanne Moore, one of our members had to say about the Kite Festival:

“It was wonderful to be a part of a festival that was so fun and exciting. All fun aside, festivals such as these are an important part of the community learning more about what Epilepsy is and how many people are affected by it.

Epilepsy has touched my life in several different ways. I am an individual with Epilepsy, I am also a caregiver for two clients that have Epilepsy, and most recently my son has been having seizures.

My family and I had the wonderful pleasure of taking in many of the activities offered during the Kite Festival. The first thing we did was go to the Bay Center for the opening ceremonies. It was wonderful to see Connor Doran perform with his indoor kites. My husband and I had previously watched him on Americas Got Talent and were so disappointed when he was eliminated. His kite flying is truly beautiful and his kite just dances to the music. On Saturday we went down to Clover Point and watched some of the beautiful kites soar. We had brought my 2.5 year old son down and he was sooooo excited to make his own kite and get to fly a kite for the first time. He also loved the Gigantic bubbles that were happening as well. It was so encouraging to see so many people of all ages there to enjoy the events and to see so many community groups actively involved. A huge thank you to everyone that worked so hard to make this event such a great experience for all. I look forward to seeing what next year brings.”

Interested to see what you missed? Click here to see a summary of the three days of events: https://www.youtube.com/watch?v=XceNpHsc5d8&feature=youtu.be


What’s Happening at HeadWay

To register or learn more about any of the programs here, contact Sonya Dhudwal at (250) 475-6677 or [email protected]

Workshops

Living a Healthy Life with Chronic ConditionsWe are thrilled to be able to offer this six-week self-management program again this Fall. Self-management programs give people the knowledge, skills and confidence needed to successfully manage chronic health conditions. Participants will meet weekly with their peer leaders and other group members for 2 ½ hours in order to learn about goal setting and how their epilepsy symptoms may be influencing emotions, energy levels, or stress levels and gain invaluable tools toward learning new skills and living a healthy life. The next workshop will run during the afternoon starting Thursday, September 25 through until Thursday, October 30 from 1:00 p.m. to 3:30 p.m. This program is FREE, however, you must be registered to attend. Family members are welcome to attend as well, but must commit to participate in the program for the full duration. If you would like to read more on the information before registering, please visit: www.selfmanagementbc.ca

The child with epilepsy: A practical guide for parents

The goal of this workshop is to provide parents of children with epilepsy some strategies and resources to feel prepared to meet any challenges and reduce anxiety about living with seizures. The next workshop will take place on Saturday, October 25th at the HeadWay office. Lunch will be provided. Cost: $10.00. Contact Sonya for more information or to register.

GroupsSupporting adults with epilepsy This group is available to anyone with epilepsy who feels as though they would benefit from some peer support. Whether you have had epilepsy since you were a child or are newly diagnosed, sharing your story and hearing from others can have a significantly positive impact on your life and on the lives of those you touch. Even if you are presently seizure-free or if you are having active seizures, it does not matter. This group provides a safe space for individuals to discuss epilepsy-related issues, such as medications, relationships, sleep, and lifestyle. The facilitator of this group, Pauline Johnson, has been a volunteer with HeadWay since 2006 and is person with epilepsy herself. Her work experience and background education helps her in this role. One-to-one support is also available and can be coordinated through the Centre, however, adults with epilepsy are invited to be a part of this specialized support group that provides the unique opportunity to connect with other adults living with epilepsy, learn more about epilepsy, and share your feelings and concerns in a warm and supportive environment. This group meets at HeadWay on the 3rd Tuesday of every month. Contact Sonya Dhudwal for more information 250-475-6677 or [email protected].


Support for young adults with epilepsyWhether you’ve had epilepsy all your life or started having seizures in adolescence, issues rise up whenever your life changes- and changes are bountiful in adulthood! Come out and meet other adults who have epilepsy. Talk about anything from school and jobs to relationships to medication management. The group meets on the second and fourth Tuesday of every month at HeadWay.

Epilepsy Advisory CommitteeThe Epilepsy Advisory Committee meets four times per year to help plan the epilepsy services which best reflect the needs and interests of our members. We believe that it is people such as you, who understand the day-to-day experience of epilepsy, who can help us ensure that our services are on track. The next meeting is September 9th, 2014 from 12:00-1:30.We are currently looking for new members! We need input from parents and young adults in school or new work environments. Contact Barb for more information. 250-475-6677.

Peer SupportWant to meet with others who are touched by epilepsy but prefer a one-on-one setting? Sign up to provide peer support and share your experience and knowledge.

Tutoring Services

Tools for SuccessThe tutors in the Tools For Success program will help you:• Identifylearningchallenges• Buildonstrengths• DeveloplearningstrategiesthatarepersonalandeffectiveTutors work with children in small groups and yet the program is highly individualized. Weekly tutoring sessions involve a variety of approaches, and interactions, so that learning is a fun experience. SPACE IS LIMITED and pre-registration is required. Payment plans and subsidies available. Students meet with tutors Wednesdays at UVIC from 4:30-6:00 from September to April. An enrollment list is being taken for the 2014/2015 school year; please contact Sonya Dhudwal at (250) 475-6677 or [email protected] for details.

HeadWay BlogAs a person with epilepsy or a loved one of someone with epilepsy, you’ve seen it all and you’ve learned along the way. HeadWay would like you to have the opportunity to share with others in our online blog. Check out what others have shared at http://www.vepc.bc.ca/epilepsy-blog/. You can submit to the blog by contacting Sandra Graham, Community Awareness Coordinator, at (250) 475-6677 or [email protected].

The BrainwaveWant to share an experience, tip, or trick to dealing with epilepsy? Then contribute to the Brainwave; send a letter, poem, artwork, interesting web link, or anything of interest! If you would like to access the Brainwave in electronic form, please e-mail your name and address to [email protected] with “Green Brainwave” in the subject line.


What’s New in the Library?A BIG THANK YOU for the generous grant received through the Times Colonist Raise-a-Reader initiative for proving funds toward supporting our ever growing library. These updated books about seizures and epilepsy will undoubtedly provide education in relaying whatever message is applicable in whichever facet seizures affects a child’s or teen’s life. Whether it is understanding what is happening in their body when they are experiencing a seizure, why they need to take antiepileptic drugs, or providing a parent assistance in explain their

condition to their children, we now have a book that you can sign out! These age appropriate books will aid in combating the stigma so many children and teens who experience seizures encounter. Having books, such as “My Mommy has Epilepsy” or “My Daddy has Epilepsy” allow parents to start a discussion with their children that lessens fear and increases confidence in that child administering basic seizure first aid.Epilepsy affects 1% of the population and children/youth represent the largest group of people experiencing seizures. We know that our childhood experiences impact the way we lead our adult lives and that reading is a direct path to knowledge and understanding which allows us to experience control of our lives and make wise decisions.

• The Why and What of Epilepsy: A Book for Children and Teens by Karia Roopal•My Mommy has Epilepsy by Stacey Chillemi

•My Daddy has Epilepsy by Stacey Chillemi

•The Great Katie Kate Explains Epilepsy by M. Maitland DeLand

•Mighty Mike Bounces Back: A Boy’s Life with Epilepsy by Robert Skead

•Epilepsy: The Ultimate Teen Guide by Kathlyn Gay

•CanItellyouaboutEpilepsy?Aguideforfriends,familyandprofessionalsbyKate Lambert

•OneDayWhenMyWorldShook:ABookaboutEpilepsy by Colleen Nestroyl

•WallytheWhale:ATaleaboutaWhalewithSeizures by Sara Manning

•Orchestra in Our Brain: The Story of a Child with Epilepsy by Cynthia Fabian

•MedikidzExplainEpilepsy:What’supwithJack? by Kim Chilman-Blair


Eat Well, Exercise & Supplement to Save Your Bones!

This article is written to help readers better understand bone health. The article should NOT replace a discussion with your doctor about your specific medications, supplements and health needs. Jonathan L. Cox, B.Sc. Pharm, Co-owner, Vital Health Pharmacy www.vitalhealthpharmacy.com

Bone Health and Epilepsy

Many of us have images of bone as solid, inanimate structures (like porcelain or wood) over which we have no control. Well, these images may not give enough credit to the remarkable living structure that bone really is! Given the right conditions, bone re-grows throughout adulthood. Eating properly, exercising, and learning more about your medications for epilepsy can help keep your bones strong and healthy!

Top Recommendations for Maintaining Bone Health:

1. Exercise regularly, with weigh bearing exercise to stimulate bone growth and bone density.

2. Avoid smoking and excessive alcohol and caffeine intake.

3. Eat well, obtain adequate protein to maintain muscle mass to support bone and joints and prevent injury.

4. Obtain adequate Calcium and Magnesium from your diet, supplement to “top up” what is still needed (see the Dietitians of Canada web-site for the mineral content of common foods). Only start supplementations after talking to your doctor and pharmacist about potential interactions. You may still need to supplement, but the timing of the supplementation may matter.

5. Take Vitamin D. In our climate, routine Vitamin D supplementation is cheap, safe and data-supported for bone health. At least 800 IU is recommended and up to 4000 IU per day for adults is safe.

6. Learn About Your Anti-Epilepsy Medications. Do they cause osteoporosis? If so, talk to your doctor, pharmacist and health care team about what steps are possible to increase bone health.

The full article can be found on our website at http://www.vepc.bc.ca/epilepsy-blog/view/eat-well-exercise--supplement-to-save-your-bones/


Volunteers NeededAs a non-profit organization, Headway heavily relies on individuals to help by volunteering their time, not only donations. Volunteers are the backbone of our organization and we would not be able to execute the important work we do without their dedication and support. Here are a few upcoming volunteer opportunities presently being offered:

Puppetry We are so excited about our upcoming Puppetry troupe, “Get it? Got it!”, but we need your help! The puppets have arrived and the scripts have been written, now we need you to volunteer your time to bring the puppets to life and teach children an important lesson about being an ally to those who are different from us. Here’s what you need:

You need to know a lot about the specific difference (epilepsy, newcomer issues, autism, or fetal •alcohol spectrum disorder) – which you can learnYou need to know how to be a puppeteer with Bunraku style puppets – which you can learn•You need to commit to being part of a troupe team and practice the delivery of a presentation on a •regularly scheduled day each week during regular school hoursYou need to commit for a year, if possible•You need to enjoy talking to children•You need to be relatively fit and be able to get yourself and the puppets to presentations•

Victoria Goodlife Charity MarathonHelp us raise awareness about epilepsy and the services and programs HeadWay offers. Cheer, run, or support! There are different races to participate in on October 12th, including the marathon, half marathon, 8 kilometer road race, or the kids run. Not a runner? Not a problem! Contact us to obtain more detailed information about helping us raise funds by becoming involved as a volunteer with this event.

Informational brochure distributionWe have updated our brochures and as such, need your help to get this information to different organizations around town, including libraries, recreation and community centers.

Other OpportunitiesIf none of these volunteer positions are of interest to you, please get in touch to discuss which of the many volunteer opportunities would suite you best. We would be happy to set up a time to meet with you.


The Open Road: Travel Assistance

Agency Update

BC ID UpdatesAs many of you know, the BC ID can be used in place of a driver’s license for identification purposes. If you are a social services client and you need to replace your BC ID, the Ministry will replace it for you for free as long as you have either a Ministry cheque stub, or a letter on Ministry letterhead. Note: Seniors who turn in their driver’s license can get their original BC ID for free. The Ministry does not require you to be on social assistance.

Community Travel training BC Transit offers free training to anyone who needs assistance in learning how to use the bus system. If seizures interfere with communication you may also benefit from an emergency bus card to inform drivers of the stop you need. Call (250) 384-7723 for further information.

Bus Tickets Available from our OfficeFor people who do not have a bus pass, and are in financial need, a limited number of bus tickets are available to help you get to doctor’s appointments, employment interviews or to look after children’s needs. HeadWay has children’s tickets as well. Phone us at (250) 475-6677.

Hope AirIf you need to travel for medical care, Hope Air makes flights available from Victoria to Vancouver. Only round trip flights can be scheduled and a $50 processing fee is charged for the ticket. Call toll-free 1-877-346-HOPE or www.hopeair.org

Seizure Investigation Unit, VancouverIf you’re travelling to the Vancouver General Hospital, the “Off Island” booklet is full of helpful information. Phone (250) 475-6677 for your free copy.

Canadian Anti-Spam Legislation (CASL)

Headway Victoria Epilepsy and Parkinson’s Centre requests your consent!

Canada’s anti-spam legislation came into force on July 1, 2014, requiring that we obtainyour consent to continue sending you certain types of electronic communications (email). This mayinclude event invitations, updates, announcements, newsletters, publications, or other informationof interest to you. If we have your email address, you will receive a request to give your consent.You are a valued member of our community and we hope to continue sharing informativecommunications about the Centre with you. You may withdraw your consent or update your contactdetails and preferences at any time by contacting [email protected]


GoodLife Fitness Victoria Charity Run MarathonSunday October 12th

As a non-profit agency, we depend on the donations we receive from the community. As a community member, your support allows us to continue to provide services for those living in the Victoria area. Thank you!

This year, staff members, Lindsay Beal and Sonya Dudhwal are lacing up their sneakers in support of raising some much needed funds for the agency.

Part of Lindsay’s role here at the agency, is to coordinate the Parkinson’s excercise programs which take place at the Cedarhill Recreation Centre and Saanich Silver threads. These programs are offered at minimal cost to the public. For those living with financial barriers, subsidies are also available. Lindsay has set a fundraising goal of $800.00 which she hopes will go towards ensuring programs such as these continue to be accessible to all. Help Lindsay meet her goal by sponsoring her or joining her term! Donations can be made directly towards Lindsay’s fundraising goal here:

http://www.raceonline.ca/donate/?fg=cc7dacd6-8f56-4937-9729-0190203ecde8

Sonya is our most recent addition to the team, and is filling in for Jennifer Morgan during her maternity leave. The past three months have been a busy time for Sonya as she learns more about our organization. One thing Sonya has learned is how many of our Epilepsy members are faced with transportation cost issues. For individuals living on a minimal income, bus tickets can be an added expense. Sonya’s goal this year, is to raise 200.00 which she hopes will go towards ensuring our agency can continue to offer bus tickets for those who need it. Donations can be made directly to Sonya’s fundraising goal here: pledge.at/Sonya

The Victoria Charity Marathon is an opportunity to get involved in your community!

Here’s How you can get involved!Sign up to be a cheerleader • for the runners or walkers on Sunday October 12th.

Join us on Dallas Rd, Victoria and help us to cheer on the HeadWay Team!!!Team t-shirts and wristbands are provided for cheerleaders and runners.

Support the 2014 HeadWay Team•Collect pledges and sponsors and raise awareness for Epilepsy and Parkinson’s services at HeadWay, the Victoria Epilepsy & Parkinson’s Centre. Go online directly to the HeadWay Supporters Team, http://pledge.at/HEADWAY2014 . You can also collect pledges using the form provided. Complete the form by printing clearly including full mailing address and postal code.** If the information is incomplete, we cannot issue a tax receipt. **

Questions or concerns? Contact Barb Gilmore at 250-475-6677. New to fundraising? We’re here to help! Call us to enquire how we can support you in meeting your fundraising goal!


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Drug ShortagesBeing met with a drug shortage while attempting to get your prescription filled is not only inconvenient, but it can also have serious health consequences.

As some of you may already know, current drug regulations do not require pharmaceutical companies to report drug shortages. Instead, companies can choose whether or not to post relevant information onto the drug shortages website drugshortages.ca. Not all companies decide to share this important information, unfortunately. This is a major concern considering the impact

abrupt changes to medication can have for someone taking an anti-epileptic drug (AED).

Many feel as though the current system is unreliable and not working to their satisfaction. The Canadian Epilepsy Alliance (CEA) is one such organization that feels this way and is working toward improved changes. Alternatives, such as early notification have been suggested as well as adopting prevention (identifying and addressing the causes of drug shortages) and management strategies (see CEA’s website for a comprehensive look at their prevention and management strategy http://www.epilepsymatters.com/.

HeadWay has heard direct experience from members who have been affected by drug shortages of their AED’s. They have expressed how unfair it feels for the onus to be placed on them to rectify their own situation when faced with a pharmacy that has run out of their AED. Finally finding an AED that works to help control seizures can be a feat in itself compounded when met with discouragement and frustration when this happens. HeadWay members have shared stories of having to scramble by scouring the city’s different pharmacies in their desperate attempt to locate their AED in order to avoid the consequences associated with missing a dosage or changing medications. Consequences such as changes in seizure control, side-effects or other health consequences, safety consequences, effects on independence, effects on employment, financial consequences, stress.

There was a recent Health Canada public consultation on drug shortages. Did you participate? As mentioned above, the CEA is working toward making improvements on this matter with the implementation of different strategies. What do you think? What has your experience been? Tell us about it. Please get in touch and share your story with us.

Source: Canadian Epilepsy Alliance http://www.epilepsymatters.com/


From the Executive DirectorIt’s been a busy time since the last newsletter. The public awarenessmonths in March for epilepsy and April for Parkinson’s; theInternational Kite Festival in May; and the HeadWay CharityGolf Classic in June kept all of us as staff and our many volunteersextremely busy. Those efforts are very much appreciated and wenta long way to increasing community education and awareness ofHeadWay.

Many thanks to Alicia and Ross Young for generously creating 2Headway banners; one for HeadWay and one for the HeadWayCharity Golf Classic. They’re perfect!

Cheers and praise are extended to the 2014 Charity Golf tournament committee for their past year’s efforts; Pat Fafard, Ron Gaudet, Bill Pettinger, Murray Scharf, Ken Langdon, David Medler , Della Cronkrite and Monica Powell. They managed to get $49,000 in sponsorships including Peninsula Co-op title $15,000 and a silent auction table worth almost $18,000. With most expenses accounted for, it looks like HeadWay revenue will be about $40,000. Monica Powell, event coordinator, worked diligently with the committee and the event would not have been a success without her and Ken Langdon of Olympic View golf club.

The 2013-14 Annual Report and 2013-14 Audited Financial Statements reflect the highlights andfinancial transactions of the past year. They were presented at the Annual General Meeting June 26thand are available to view on our website http://vepc.bc.ca/about_us/annual-report.html.I would like to express my thanks to David Medler who has been the President of the Board ofDirectors for the past 3 years. He resigned at the end of May 2014 and Ross Young (Vice President)has taken the role.

Thank you to everyone for responding to the Society’s summer donation campaign. You will havereceived your letter in the mail early July talking about planned monthly giving. Personal, individualmembership donations are more than a quarter of our budget revenue, which is quite significant andso very much appreciated. Remember we are Victoria Epilepsy & Parkinson’s Centre for all cheques.(do NOT include HeadWay or VEPC).

I hope everyone has enjoyed this summer weather and sunshine and has had time to pause fromevents. Thank you again to the wonderful recent and long-time volunteers that care for and supporttheVictoria Epilepsy & Parkinson’s Centre.

Publications Mail Agreement No. 40050532Return Undeliverable Canadian Addresses to:

Victoria Epilepsy & Parkinson’s Centre Society202-1640 Oak Bay AvenueVICTORIA BC V8R 1B2

IMPORTANT CHANGE OF ADDRESS NOTICE - To reduce agency costs for newsletters returned with incorrect addresses, please keep us informed of any change in your address so that we can ensure you receive the newsletter

“The Brainwave”Published seasonally

Editor: Sandra GrahamCanadian Mail Publications

Agreement #40050532

DIRECTORS:President - Ross YoungVice-President - Andrew TrinderTreasurer - Fiona BaylissSecretary - Sheri D. WelsfordAlanna HolroydNathan LampardDr. Alex Henri-BhargavaMatt PeulenCharles MeadowJohn Pereira

STAFF:Executive Director -Barbara Gilmore MPubRelParkinson Program Coordinator -Maureen Matthew, B.S.W.Epilepsy Program Coordinator Sonya Dhudwal, MSW, RSWParkinson’s Outreach Coordinator - Lindsay Beal, M.EdCommunity Awareness Coordinator - Sandra Graham, B.S.WAccounts- Della Cronkrite

EDITOR’S NOTE: Our newsletter and education meetings provide a range of information which does not necessarily reflect the views of our agency. Please use your discretion and consult your physician.

Newsletter Support provided by:

Advertising GuidelinesAcceptance of advertising does not constitute an endorsement by the Victoria Epilepsy & Parkinson’s Centre of the products or services listed.Distribution: 800 Victoria & Vancouver Island Seasonal Issues: Fall, Winter, Spring/Summer

For ad rates, format, deadlines and payment options please contact Della Truitt, VEPC Office Manager, at (250) 475-6677 or email: [email protected]

Confidentiality GuidelinesWe respect your right to privacy, so please be assured that our agency does not share our membership list with outside individuals or organizations. Occasionally we may ask you to volunteer some information so that we can better understand our clients’ needs and improve our services.

Please Note: Our website is now www.headwayvictoria.com but is being quickly redirected to www.vepc.bc.ca while we change over. We remain the Victoria Epilepsy and Parkinson’s Centre (not VEPC/ not HeadWay) for any cheque payments.

Documents

Coordinator’s Commentary - vepc.bc.cavepc.bc.ca/public/AUGUST_Brainwave_2014.pdfcolor.pdfmay not be advisable due to [the] lack of information on safety and efficacy [of marijuana