Third edition of Z902

Third edition of Z902 Blood Standards Now complete

 

Lorna Stevens, our President was heavily involved with this project from day one. Her comments follow.

Announcement From Jeffrey Kraege

Project Manager, Health Care and Community Safety

Standards

CSA Group

I am pleased to report that the third edition of Z902 is now published in both official languages.  Committee member copies of both versions are attached.  Many thanks to everyone for all the time and effort you have contributed to this standard! It has taken awhile, but through this process I think we have developed a strong document.

Special thanks go out to Gilles Delage for his excellent leadership during the development of three editions of Z902.  This was a tremendous task, and he has met every challenge with clear direction, creativity, and insight.

I would also like to extend my appreciation to Héma-Québec for its help in reviewing the final translation and making many improvements.

Best wishes to all for the holidays, and Happy New Year!

Regards,

Jeffrey


 

From Lorna Stevens:

Finishing off the Z902-15 STANDARDS, a project initially embarked on with the first meeting I attended Dec.1999 in Ottawa after the San Diego ASH Conference, is the icing on the cake!

The many incredible individuals that were involved with this project over the years that I was privileged to know well and respect are too numerous to mention.

The constant was ALWAYS Dr. Gilles Delage!!!

Jeffrey Kraegel said it best. Special thanks go out to Gilles Delage for his excellent leadership during the development of three editions of Z902.  This was a tremendous task, and he met every challenge with clear direction, creativity, and insight.

May 2016 be a safe, healthy &, happy year for all to enjoy!

warmest regards,

Lorna Stevens

President & Co-founder

Neutropenia Support Assoc. Inc.

Remaining a 100% volunteer driven Canadian Charity #0848093-11 since 1989.

 

 

Compassionate Care Parking Pass Project

Thank you's received from ALL hospitals in response to our Compassionate Care Parking Pass Project!  We HOPE to continue it and expand it!

The Neutropenia Support Association Inc. provided $2,128.72 to B.C. Children's Hospital, $1,500. to Cancer Care Manitoba, and $2,000. to Sick Kids to be used for Compassionate Care Parking Passes (CCPPs) to aid families financially with long term stays in hospital as their children deal with the many Congenital  Neutropenia Syndromes including  Cyclic Neutropenia, Severe Congenital Neutropenia &  Kostmann Disease,  Reticular dysgenesis, other forms of Severe Chronic Neutropenia ( SCN), Shwachman-Diamond syndrome, Dyskeratosis congenital, Barth syndrome, Pearson's syndrome, Glycogen storage type 1b, Chediak-Higashi syndrome, Griscelli syndrome, Hermansky-Pudlak syndrome type II, p14 Deficiency, Cartilage-hair hypoplasia. Hyper-IgM syndrome, Schimke immuno-osseous dysplasia, Myelokathexis & WHIM syndrome, Wiskott-Aldrich syndrome.

Also, Autoimmune Neutropenia, Idiopathic Neutropenia, Viral ,Drug-induced Neutropenia. Bone Marrow Transplant recovery, Stem Cell Transplant recovery, including those challenged by Chemotherapy- induced Neutropenia and other rare blood diseases.

For more knowledge on the molecular pathogenesis of severe congenital neutropenia with ANCs below 500/ul and associated with severe systemic bacterial infections from early infancy  please read: A Molecular Classification of Congenital Neutropenia Syndromes  by Dr. Laurence A Boxer and Dr. Peter E. Newburger.

Special THANK YOU to the Grand Court of British Columbia, Order of the Amaranth for their fundraising efforts.  Their total fund raising contribution was provided to the B.C. Children's Hospital.

Special THANK YOU for the generous support of our long standing donors and volunteers contributing since 1989 to NSAI and helping us promote awareness, and support for our many projects over the 25+ years as 100% volunteers.

Hopefully, with your support, we will  continue to offer CCPPs to these and other Canadian Children's Hospitals and Clinics.

PLEASE DONATE!  Tax deductible receipts will be provided. Reg. Charity No. 0948093-11

You can also choose the Neutropenia Support Association Inc. to donate through the United Way.

Kindest regards from The Neutropenia Support Association Inc.

We remain 100% voluntary since 1989.

This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

 

19th ANNUAL NEUTROPENIA GOLF TOURNAMENT/DINNER

(OR BETTER KNOWN AS BENNY'S TOURNAMENT - THE POOR MAN'S )

 

2012 Neutropenia Golf Tournament update 

MAY 17th, 2012 at the KINGSWOOD, was SOLD OUT.

 

This year’s Golf Tourney was another “hole-in-one” smashing success. There were just under 156 golfers in attendance, the weather was great and turned out to be a beautiful day for all. The dinner format was changed to buffet style, I believe this helped the evening “move along” a little faster. Dr. Jon Gerard was in attendance and gave an inspiring motivational speech. Lots of great prizes were handed out, the live auction created a feeding frenzy of some hot items. Gary Curtis, Director of Golf at the Kingwood Golf & Country Club was honored with a Special plaque to commemorate his overwhelming support and extreme generosity and contributions to make this event a tremendous success year after year.  

 

On behalf of Neutropenia Support Assoc. Inc. I would like to Thank Gary Curtis and his staff at the Kingwood Golf & Country Club for their continued support for once again another extremely successful Golf Tournament. I would also like to thank all the golfers who come out year after year, without you this event would not happen … Thank-you … to all our hole sponsors,  and to every person that contributed to this event.

 

 

 

Thank-you

 

 

Until next year.. 

 

Mike Carlson

Vise-President, Neutropenia Support Association.

  

  

 

An important Message from Our President..  Lorna Stevens

 

Tax deductible receipts will be supplied for HOLE SPONSORSHIP @ $100.00

 DONATIONS ARE ALSO GRATEFULLY RECEIVED  and tax deductible receipts supplied.

The research advancement and knowledge gained about this rare blood disorder since we started in 1989 has truly been amazing.
The failure of chemotherapy treatment without the development of the current cytokine treatment & SCN Canadian participation in the Clinical phase lll trials, lead to  approval and thousands of Canadian lives saved each and every year.
ALL Cancer patients because of the clinical evidence supporting the importance of dose-intensity in cancer chemotherapy have a chance of a higher response rate and greater success.
We remain 100% voluntary and this is our only fundraiser we depend on each year.
We hope we can count on your support.

It is truly amazing when we look back and recognize all the projects we have helped support over the years.
 
Dr. Bonnie Cham and U. of Manitoba Cell Biology, Dr. Melvin Freedman,  and others at Toronto Sick Children's,
a microscope for the Janeway.  Hospital needs from VCR's for the children's wards to Major Medical Journal subscriptions for the library. Now, parking passes distributed by the Child Life Specialist for parents with children in hospital and supporting other needs as recognized by child health programs.
 
As you know the diagnosis of a chronic life -threatening illness creates many challenges.
 
All members of the family experience stress, anxiety  and fear related to illness, treatment and hospitalization.
For parents and caregivers there are additions stressors related to financial concerns.
Often one parent must give up their job for a long period of time to care for their child.
 
In addition to managing their households with less financial resources there are other expenses including daily parking charges and meals for their hospitalized child.
 HOSPITALS DO THEIR VERY BEST, to make meals child-friendly, but children with neutropenia have special requests and good nutritional status is very important in their physical and psychological well-being.
 
The last 2 years we have provided parking passes and assistance of nutritional support for this patient population.
 
Confidentiality is maintained  through the Child Life Specialists that provides on our behalf the support needed to reduce some of the stress associated with these medical challenges.
 
 Our  2012 golf tournament will enable us to once again meet these goals.
 
Thank you!
 
Lorna Stevens on behalf of Neutropenia Support Assoc. Inc.

 

 

CANADIAN BLOOD SERVICES recognize Lorna Stevens

CANADIAN BLOOD SERVICES was please to recognize Lorna Stevens for her dedication to the blood system with a plaque and a pen set presented to her in Ottawa.

Her participation on the National Liaison committee distinguished her as someone committed to improving the lives of others.  Lorna was an original member of the CBS National Liaison Committee October 23rd, 2001 and her last meeting was in Ottawa, March 26th, 2012.

LORNA STEVENS  continues her good work as a volunteer representing NSAI with the Canadian Standards Association Technical Committee on Blood and Blood Components formerly known as Health Canada's

Expert Working Group on Blood Standards.

 Should you wish more information or have any questions, please call our toll free # 1-800-6-NEUTRO and leave a message on our answering machine. President Lorna Stevens will return your call.

important message from Lorna Stevens

International  Neutropenia researcher, Dr. Christopher Klein was awarded the top recognition at ASH this past December is a really BIG deal and highlights how far NEUTROPENIA has come since we started in 1989.

 

 His discoveries scientifically have contributed to helping the lives of so many with congenital neutropenia.  The William Dameshek Prize was awarded to Dr. Christoph Klein because of his pioneering research into the pathophysiology, the landmark discovery of mutations in HAX1 genes in patients with severe chronic neutropenia ( Kostmann disease) and the discovery of human P14/ROBLD3 deficiency and G6PC3 deficiency, genetic defects that can cause Kostmann syndromes. His contributions identified the genetic basis of several diseases on  the immune system and has had a large impact on the understanding of human blood and the immune system.