Turner Syndrome Society of Canada News

TS Information Day Halifax October 2

2010-09-16T07:41:00.000-07:00

The Turner Syndrome Society of Canada will be hosting an Information Day at the IWK Health Centre in Halifax on Saturday, October 2.

We are aiming to provide a chance for women and families affected by TS in the Maritimes to get together and share their stories; to hear updated medical information; and to discuss setting up a TS support group or groups in the Atlantic region. Dr. Beth Cummings will be giving an overview of health issues and TS, as well as a panel presentation on growth hormone.

Please contact the TSS office at 1-800-465-6744, or info@turnersyndrome.ca for a copy of the event brochure and registration form, or more information.

We hope to see you there!

Mark these dates: Conference 2010 May 14 - 16 in Ottawa

2009-07-23T13:53:00.000-07:00

We are pleased to announce that the 29th Annual Conference of the Turner Syndrome Society of Canada will be held in Ottawa, on the weekend of May 14 - 16, 2010!

Come join us! - the Tulip Festival will be in full swing, the Ottawa Chapter is working on great ideas for activities and the conference planning committee is developing an informative program of speakers. And, of course, it is the opportunity of the year to meet with other TS families and women, to share experiences, a few laughs and mutual support.

Watch our website at www.turnersyndrome.ca for more program details.

Our New Web Site

2009-07-15T11:16:00.000-07:00

We're very pleased at the Turner Syndrome Society of Canada to present our newly re-designed and updated website at www.turnersyndrome.ca.

Check back often for updates and useful resources. Please share your comments here and let us know what you think!

Calling All Authors

2009-06-30T14:20:00.000-07:00

Calling All Authors

Your Opportunity to Contribute to an Anthology on life with Turner Syndrome

Claudette Beit-Aharon, a mother of a girl with TS is creating a book of essays written by women and girls who have Turner Syndrome. The aspiration of the book is to provide a view of TS as a challenge and opportunity. The focus will not be exclusively on medical problems, but on personal growth, understanding, and reflection.

Turner women and girls are encouraged to write and share in 2000 words or less, their tales of trial and triumph; perceptions of the world and life; views on fertility and sexuality; relationships with parents, friends, siblings and partners; and visions, dreams and reflections. From the submissions, we will be selecting approximately 40 essays, roughly equally divided between those from girls and women with TS.

There will be an appendix with medical info on TS, with references to online information, and a glossary of terms. Writers will not have to explain these details. Plus, contributors will have the opportunity to vote and may make suggestions on the title. The current working title is The Long and the Short of it: Turner Syndrome Women and girls share their insights.

Submissions or questions can be sent to Claudette Beit-Aharon at
Claudette.beitaharon@gmail.com

Turner Syndrome Information Days

2009-06-30T12:33:00.001-07:00

TURNER SYNDROME SOCIETY OF CANADA

INFORMATION DAYS

Three TS Information Days were held in the fall of 2008, in Ottawa, London and Thunder Bay, as part of our outreach program funded by the Ontario Trillium Foundation. Each was followed up in the spring of 2009 by a group meeting to continue planning local activities in those cities.

Future plans include expanding this Information Day program beyond Ontario. We are developing proposals to hold a similar event in Halifax within the next year.

This Information Day outreach project was inspired by a very successful Toronto event organized by the Hospital for Sick Children in April, 2006. Click here to read the newsletter distributed to participants following this event.

OTTAWA, OCTOBER 18, 2008

This informative meeting featured medical panelists Dr. Alex Ahmet, Dr. Yaa Amankwah, Dr. Tannis Vause, and Dr. Lilian Lai. Afternoon workshops gave Ottawa chapter members and some new families the chance to network, as well as to discuss educational and bone health issues. The girls had the chance to create scrapbook pages in their own workshop.

Follow-up activities for the Ottawa chapter have included a new email group, and monthly social get-togethers in the spring of 2009. To join the Ottawa email group, contact Patti Laforest at p.laforest@rogers.com.

THUNDER BAY, OCTOBER 25, 2008

Irena Hozjan, nurse practitioner from the Hospital for Sick Children, traveled to Thunder Bay to present an overview of TS health issues. Dr. Abu-Bakare spoke on endocrine issues, and Melanie Laird from the Thunder Bay District Health Unit informed us about healthy lifestyle issues related to diabetes. The discussion session after lunch was particularly appreciated by the new families who attended!

LONDON, NOVEMBER 1, 2008

A TS Overview by Dr. Lisa-Ann Fraser, and a medical panel with Dr. Cheril Clarson, Dr. Herschel Rosenberg, and Dr. Stephen Power led off the day, followed by afternoon workshops sharing personal stories and discussing educational issues – plus mask-making and story telling for the girls.

A follow-up meeting February 21, 2009 marked the beginning of a new London area support group. The group’s first plans were for a park picnic May 30. For information on the new London group, contact Lindsay Traichevich at lindsay.traichevich@hotmail.com

Sharing their stories: Turner Syndrome affects 1 in 2,500 women

2008-10-28T15:08:00.000-07:00

BY PETER BURKOWSKI
THE CHRONICLE-JOURNAL

Women living with a rare genetic condition shared stories and information in Thunder Bay on Saturday.

Turner syndrome, a genetic disorder affecting roughly one in 2,500 women, has a wide range of physical symptoms including short stature and absence of hormonal development during adolescence.

The Turner Syndrome Society of Canada held an information session about the syndrome at the Thunder Bay Regional Health Science Centre.

The session included talks by medical experts, and also gave women living with Turner syndrome a chance to network and share stories.

Mary Edwards, a woman with Turner syndrome and the society’s executive director, said that six adult women and four families in the Thunder Bay Region have contacted the society. “You’d expect somewhere around 20 individuals to be affected in the Thunder Bay Area, so we probably know a fair proportion of them,” said Edwards. “But across Canada in general, we’re not doing that well.”

Edwards said that shyness often stops affected women and girls from trying to learn more about the syndrome and its symptoms.

For those who do contact the society, said Edwards, individual information needs can vary widely. “Parents whose little girl has just been diagnosed want information about everything to do with this condition . . . and teenage girls are concerned about their development,” said Edwards.

Edwards said that modern advances in estrogen and growth hormone replacement therapy can help girls and women to better manage the symptoms of Turner syndrome, and that organizations like the society can provide social support and access to information.

Another information session is planned to come to the region near the end of February 2009, and the society’s annual conference is in April 2009 in Vancouver.

Turner Syndrome Society 27th Annual Conference

2008-05-30T12:21:00.000-07:00

May 23-25, 2008 in Toronto, Ontario

The conference was well attended with women and families from across Canada, as well as some visitors from U.S.A. and as far as Mexico. There were over 115 participants, including 18 preteen and teen girls. We are pleased to acknowledge financial support for this year's conference from EMD Serono, Eli Lilly Canada, Hoffmann - LaRoche, and Sandoz Canada.

May 2008 Program
Presentation Summaries
Speakers Bios