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RESOURCES
Articles and Studies
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| | MONCTON SUPPORTS CHILD WITH EPILEPSY
Just over a week ago the Maeng family of Moncton recieved a letter from Citizenship and Immigration Canada saying care for their 15-year-old son, Sung-Joo Maeng — who has epilepsy and autism — was too expensive.
Since then the Moncton community has rallied around the family and politicians have been working overtime to help reverse the decision.
On Wednesday, the federal government received a letter from the province promising to provide health, education and social services for the Maeng family as long as they're granted permanent or temporary resident status.
The Maengs moved to Moncton in 2003 and own a convenience store on Main Street.
Sung-Joo Maeng was diagnosed with autism and epilepsy at age five. His father, Tae-Shik Maeng, and his mother, Hee-Eun Jang, moved the family to Canada with the hope of getting help to treat their son's illnesses.
Epilepsy Toronto and our community salute the people of Moncton for showing their support and concern for a child living with epilepsy and autism. | | | Posted on June 17th, 2011 | |
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| | NEW ID FOR THOSE WHO DON'T DRIVE
Ontario is introducing a new photo card that will provide government-issued identification to more than 1.5 million Ontarians who do not drive.
The Ontario photo card will make it easier for non-drivers to perform everyday transactions such as cashing a cheque or returning merchandise to a store. The voluntary card will be available this summer to individuals 16 years of age and over who do not hold a driver’s licence.
You can register for the card at #
Individuals may apply for the photo card at 20 select ServiceOntario centres in late July.
Applicants will be required to provide original identity documents that prove legal name, date of birth and signature. Applicants must be non-driving residents of Ontario, 16 years of age and over.
The photo card will cost $35 and will be valid for five years. For more details, visit http://www.mto.gov.on.ca/english/dandv/driver/photo-card.shtml#3 or contact Rosie Smith, Director, Adult Services at rsmith@epilepsytoronto.org. | | | Posted on June 13th, 2011 | |
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| | WARMLINE HELPS PARENTS WITH THE HEALTH CARE SYSTEM
Warmline helps parents and clients find answers to childhood disability questions
Canada’s largest children’s rehabilitation hospital, Holland Bloorview Kids Rehabilitation Hospital in partnership with Cisco Canada, has launched a warmline to help parents and clients navigate the health-care system to find answers to questions about programs, services and resources related to childhood disability.
“Understanding where to look for information on accessible programs and services that will assist your child can be extremely overwhelming,” says June Chiu, family support specialist. “We are here to help parents and clients find the information they need.”
To access the service, call 416-424-3888 or 1-877-463-0365.
A family support specialist will answer your call from 10 am to 12 pm Monday through Friday. If you call outside the hours of operation, please leave the spelling of your name, your area code, telephone number and any questions you may have and we will return your call by the next business day.
You can also email your information request to: resourcecentre@hollandbloorview.ca
The warmline is a non-crisis telephone support line for clients and family members. For medical and urgent health information 24 hours a day, 7 days a week, please call Telehealth Ontario at 1-866-797-0000.
Holland Bloorview Kids Rehabilitation Hospital is Canada’s largest children’s rehabilitation hospital, fully affiliated with the University of Toronto. We pioneer treatments, technologies, therapies and real-world programs that give children with disabilities the tools to participate fully in life. Every year, we see about 7,000 children with about 600 inpatient admissions and 58,000 outpatient visits.
For more information, visit us at www.hollandbloorview.ca
| | | Posted on April 13th, 2011 | |
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| | INTERNATIONAL DRAVET EPILEPSY ACTION LEAGUE
“Dravet (Dra-vay) syndrome, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a neurodevelopmental disorder beginning in infancy and characterized by severe epilepsy that does not respond well to treatment.”
Since 2005 the International Dravet Epilepsy Action League (IDEA League) has served as a powerful global partnership of parents and medical experts united in the goal of treating children with Dravet syndrome and related epilepsy spectrum disorders while providing information and support to their families. The IDEA League has been working on creating a comprehensive program of education, advocacy, support, and medical research to help thousands of children around the world. A high standard of business ethics and desire for professional collaboration are two of the IDEA League’s core values.
The International Dravet Epilepsy Action League strives to empower patients and their families by providing: advocacy & awareness; education & information; patient & family support; and increased medical research. Their goal is to improve the treatment of Dravet syndrome and other related genetic, febrile sodium channel epilepsies.
The IDEA League's services include:
• Distributing Free Educational Materials for families and medical professionals via their website, pamphlets, quarterly newsletter, and monthly e-bulletins, which provide up-to-date information on research, advocacy, support and league-sponsored events.
• Offering Emotional Support for families who are facing the myriad of challenges that accompany a rare disorder with chronic seizures.
• Providing Patient Assistance through financial grants to help families in paying for medication they desperately need but would otherwise go without.
• Hosting International Conferences that bring together hundreds of families to hear the latest in research, share coping strategies, and create friendships, as well as offer the opportunity to receive a consultation with top medical experts from around the world.
• Funding Medical Research using a peer-review process and competitive scoring system that enables us to subsidize the most promising studies.
• Maintaining a CCR-CCN (Collaborative Clinical Research & Comprehensive Care Network) composed of top epilepsy centers committed to providing high-quality, multidisciplinary care for patients with Dravet syndrome while developing a standard of treatment protocols.
• Serving as an invaluable Data Pool for scientists carrying out research on Dravet syndrome.
For more information, conact IDEA at http://idea-league.org/.
| | | Posted on April 11th, 2011 | |
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