Canadian Hemochromatosis Blog

Apparently Amazon is selling used copies of Marie Warder’s “The Bronze Killer” starting at $80 USD. You will be happy to know that we have new copies of “The Bronze Killer” in stock for only $20 CDN plus shipping. This book has been a source of information, encouragement and enlightenment for many, as it describes the Warder family’s fight against hemochromatosis. To purchase the book, call the CHS office at 1 877 BAD IRON (1 877 223 4766) or purchase online through our secure donation page. Please, too, consider making a donation to cover shipping charges.

February is the month that we collect donated Aeroplan Miles to reduce travel costs associated with program activities.  This year’s May Awareness Month activities alone will be generating a lot of travel expenses!

Cross-country information sessions, awareness events, client support, physician meetings, volunteerism…. these are all life-saving program activities that need your support. Help us make our money go further by donating your surplus Aeroplan Miles to CHS. Download the Aeroplan Pledge Sheet here, then fill in the information and mail/email back to CHS anytime in February. Pledge sheets must be signed in order to meet Aeroplan’s requirements. Aeroplan will then transfer your donated miles to CHS.

Thank you so much for supporting this important campaign.

In this issue of the Canadian Hemochromatosis Society’s e-newsletter, discover some of the many ways to support and be involved in the activities and mission of CHS, and help to create awareness of hemochromatosis.

The December 2012 issue of The Magnet is now available. Contents include changes to Canadian Blood Services donation criteria, holiday gift ideas, and an update on CHS’ fundraising goal for 2012. Please click here to view.

Season’s Greetings and Merry Christmas to everyone!

À tous ceux qui appuient la SCH :

La Société canadienne de l’hémochromatose est le seul organisme canadien
qui vient en aide aux personnes atteintes de l’hémochromatose et à leurs familles. Chaque année, nous répondons à des centaines d’appels téléphoniques et de courriels provenant de personnes qui récemment ont reçu un diagnostic, qui subissent un traitement ou qui gèrent les symptômes de cette maladie. Ce trouble multi systémique peut engendrer plusieurs manifestations cliniques; la SCH est là pour fournir des ressources essentielles à sa clientèle.

L’hémochromatose touche des milliers de Canadiens et notre plus grand défi continue d’être la sensibilisation à auprès des personnes qui offrent des soins de santé ainsi que des groupes les plus susceptibles d’être atteints. En 2012, nous avons mis de l’avant une initiative pancanadienne visant à créer des chapitres régionaux. Ces chapitres seront responsables de la diffusion de renseignements, d’offrir des sessions de sensibilisation et d’information ainsi qu’aider à identifier des médecins de famille qui connaissent l’hémochromatose et qui sont disposés à accepter des patients qui en sont atteints. Nous avons assigné du personnel et des membres du Conseil d’administration pour assurer la formation de nos bénévoles en région et recueillir leurs commentaires sur la meilleure façon d’utiliser nos ressources communes.

Actuellement, la SCH travaille sur l’approfondissement de son partenariat avec la Société canadienne du sang et Héma-Québec. Pour la majorité des personnes atteintes de l’hémochromatose, leur bouée de sauvetage réside dans le don de sang, toute la vie durant, qui leur permettra de gérer le niveau de fer emmagasiné dans leur corps. Les personnes atteintes de l’hémochromatose ont un bien précieux à offrir et ils peuvent faire une différence dans la vie des Canadiens qui ont besoin de produits sanguins.

En 2012, nous avons reçu une subvention communautaire provenant des jeux de hasard du gouvernement de la Colombie-Britannique et une subvention du programme «Esprit communautaire» du gouvernement de l’Alberta. Nous apprécions grandement la collaboration soutenue de ces provinces. Toutefois, nous savons aussi que les subventions gouvernementales tout comme les gouvernements, peuvent changés et trop dépendre de ces fonds est loin d’être la recette du succès à long terme.

2012 fut une année très productive et nous avons l’intention d’accroître le niveau de nos activités en 2013. Si vous avez déjà fait un don à la SCH l’automne dernier, ce cadeau est grandement apprécié. Si vous n’avez pas encore fait un don, nous demandons respectueusement que vous versiez un montant égal à votre dernière contribution ou même de contribuer un montant supérieur afin de nous aider à atteindre nous objectifs ambitieux pour l’année qui vient.

Au Canada, il y a une communauté qui souffre de l’hémochromatose. Plusieurs personnes ne savent même pas qu’ils appartiennent à cette communauté.

Aider nous à rejoindre ces personnes et leurs familles afin que nous puissions sauver des vies, empêcher des souffrances inutiles et aider tous les Canadiens atteints de l’hémochromatose à comprendre leur état et à le gérer facilement.

Au nom du Conseil et de l’équipe de la SCH, je vous remercie et plusieurs Canadiens vous remercient aussi.

Patrick M. Haney

Président and Président du Conseil, Société canadienne de l’hémochromatose

Dear Supporters of CHS,

The Canadian Hemochromatosis Society is the sole Canadian organization providing support to hemochromatosis sufferers and their families. We respond to hundreds of calls and emails annually from individuals who have been recently diagnosed, are in treatment or are managing symptoms. This multisystem disorder has many clinical manifestations; CHS marshals key resources to help our clients.

Hemochromatosis continues to affect thousands of Canadians and our single greatest challenge is to build awareness of the disorder amongst primary care providers and our highest risk groups. In 2012 we undertook a cross-Canada initiative to build regional chapters. These chapters will take on the responsibility to disseminate information, host awareness/information presentations, and help identify family physicians that are hemochromatosis-knowledgeable and willing to accept patients who have the disorder. We have deployed staff and board members to train our regional volunteers and solicit their opinions on the best use of our communal resources.

CHS is deepening its partnerships with Canadian Blood Services and Héma-Québec. The silver-lining of hemochromatosis is that for the majority of its sufferers, lifelong blood donation will be critical to managing iron stores in their bodies. Hemochromatosis patients truly have something important to give and we can be difference-makers for Canadians in need of blood products.

In 2012 we received public support from the BC and Alberta governments through a gaming grant and community spirit grant respectively. We are most appreciative of these provinces’ continued support; however, we are cognisant that government grants, like governments themselves, are subject to change and to remain over-reliant on these funds is not a recipe for long-term success.

We have had a very productive 2012, and we intend to increase our activity levels in 2013. If you have given to CHS this past fall, we are truly grateful for your gift. If you have not yet made a donation, we respectfully ask that you match or even grow your past contribution so that we can achieve our aggressive goals for the coming year.

There is a community of hemochromatosis sufferers in Canada. Many are not even aware they belong to this community.

Please help us reach these individuals and their families so that we can save lives, prevent unnecessary suffering, and help all Canadians affected by hemochromatosis understand and easily manage their condition.

On behalf of the Board and Team at CHS, I thank you and many Canadians thank you.

Patrick M. Haney
President and Chair of the Board, Canadian Hemochromatosis Society

For years, Canadian Hemochromatosis Society member Linda Dooley wanted to spread hemochromatosis awareness in a BIG way. Her persistence finally paid off, as she is pleased to report that an article she wrote on hemochromatosis was published in the Summer 2012 issue of Canadian Health Magazine.

Canadian Health is published by the Canadian Medical Association for physicians and is available to the public by subscription.

Kudos to Linda for a well written article. You can read Linda’s story here.

The 2011 Annual General Meeting was held on June 27th at the Richmond Caring Place in Richmond, BC.

A new Board of Directors was elected at the meeting, and includes Patrick Haney of Vancouver, British Columbia as President and Chair of the Board, Frank Erschen of Toronto, Ontario as Past President, Kelly McQuiggan of Vancouver as Treasurer, Ryan Howe of Vancouver as Secretary, Dr. Sam Krikler of Richmond, British Columbia, Warren Funt of Vancouver, David Lloyd of Vancouver, Shannon Haney of Okotoks, Alberta, and Pat McParland of Vancouver.

Returning directors are Patrick Haney, Frank Erschen, Kelly McQuiggan, Dr. Sam Krikler, Warren Funt, David Lloyd, Shannon Haney and Pat McParland.

On Saturday, April 28, 2012, Il Sono Men’s Vocal Ensemble of Calgary, Alberta, gave a benefit concert for the Canadian Hemochromatosis Society.  They titled the concert “His Sound: a concert celebrating the male voice”, and a celebration it was.

They covered 400 years of “the manliest music from Giovanni Palestrina to Billy Joel”.  There was even a local composer, Georgina Craig, who accompanied her pieces on the flute.

After intermission Anne Stang, one of the local representatives of CHS, gave a  brief presentation about hemochromatosis.  It was a timely concert because one of the singers was diagnosed with hereditary hemochromatosis just two weeks before.  At the reception after the concert, Anne and the others, Carolyn O’Connor and Amanda Bennett and some of her relatives, answered more questions for individual audience members.  Again the comment, “I’ve never heard of this condition” was frequent.

Many thanks to Il Sono for their support.

Here is the link to our April 2012 issue of  our e-newsletter, “The Magnet”. In the newsletter, you will find details about CHS’ booth at the Prince George home show, read more on this weekend’s musical event in Calgary benefiting the Canadian Hemochromatosis Society, and learn how you can help CHS during May Awareness Month and through DonateNaturally.com.