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Why a new Committee?

In the fall of 2006, the Canadian Hemophilia Society (CHS) identified the need for a committee to address the issue of youth involvement in the organization, and so the National Youth Committee (NYC) was born! The CHS-NYC consists of very excited and energetic individuals who represent almost all regions of Canada who are working together to support, promote and address youth involvement within the organization.

At our first meeting, the committee identified the various roadblocks in our various communities to youth involvement. We are currently working towards overcoming them and engaging Canadian youth with bleeding disorders in order to support each other and develop amazing local, provincial and national youth programming. We recognized that some regions already had very developed youth programming and some regions wanted to do this, but needed some help getting the ball rolling. That is one of our main goals and we have begun working together on an unprecedented national level towards this end! We will be using this section of the CHS web site to communicate and reach out to Canadian Youth with a bleeding disorder. Please visit our web page regularly and learn more about youth-oriented programs coming to a Chapter/Region near you!

Terms of Reference

Canadian Hemophilia Society – National Youth Committee

PURPOSE / ROLE

The purpose of this committee is to support, promote and address the involvement of youth (ages 15-25) within the Canadian Hemophilia Society.

DUTIES AND RESPONSIBILITIES

The duties and responsibilities of the Committee shall be to:

  • Increase the number of youth involvement in the functional, operational, and decision-making processes within the Canadian Hemophilia Society.
  • Foster an environment within the Canadian Hemophilia Society that encourages and embraces youth involvement and input.
  • Increase the level and quality of inter-provincial youth communications.
  • Ensure that all regional/provincial youth activities are consistent with the mission, vision and strategic plan of the organization.
  • Provide assistance and advice to local youth when organizing their local events/programs.
  • Promote and implement youth development programs as needed.
  • Strive to be visible at all major hemophilia events in Canada (regional, provincial and national) as well as Hemophilia Newsletters to do self-promotion.
  • Optimize cohesive coordination between chapters, regions, and national in relation to volunteer development activities through ongoing communication with local leaders.
  • Establish, through an annual performance plan, youth nationwide activities which will meet the organization's need of involving new youth.
  • Assure succession plans are developed.
  • Initiate an international youth twinning program.

MEMBERSHIP AND TERMS OF OFFICE

The committee shall be consisted of not fewer than five and not more than eighteen members and shall be composed as follows:

a)    Chairperson: Recommended by the National Youth  Committee and appointed by the CHS Board, the Chairperson or Co-Chairs shall be appointed annually and shall be eligible to hold the position of Chairperson or Co-Chairs for a maximum of 6 years.

b)    Membership: The members will consist of young people  representing all of the geographical areas across Canada serviced by the CHS.  Ideally, there should be at least one representative from every region.  Also the majority of the group's composition should be made up of those directly affected by bleeding disorders. 

The term of appointment for members shall be one year and members shall be eligible to hold that position for a maximum of 6 years.

Members should be aged between 15-25.  If a member reaches the maximum age while serving on the committee he or she will be entitled to stay until the end of his term and still be eligible for an additional two-term reappointment.

c)    Ex-officio: President and Executive Director


FREQUENCY AND NOTICE OF MEETING 

The Committee shall meet in person or by teleconference not less than once yearly and shall meet at such other times as the Chairperson or Co-Chairs of the Committee may require.

Unless otherwise agreed, notice of each meeting confirming the venue or mode of meeting, time and date, together with an agenda of items to be discussed, shall be forwarded to each member of the committee no fewer than five days prior to the date of the meeting.

AUTHORITY
The Youth Committee is a standing committee established by the Board of Directors of the Canadian Hemophilia Society.  It reports through its Chairperson or Co-Chairs to either the National Executive Committee or the National Board of Directors.  The Chairperson or a Co-Chair shall be an ex-officio member of the Board of Directors.

ANNUAL COMMITTEE MEMBERS RECRUTIMENT PROCESS
Membership will be reviewed on an annual basis and vacant volunteer positions will be advertised in CHS communication tools (website, newsletters, etc).

Membership

The CHS-NYC consists of very excited and energetic individuals who represent almost all regions of Canada. The NYC is composed of:

April Hart (Newfoundland)
April Hart is a soon to be highschool graduate from St.Johns, Newfoundland. She was born into a family history of hemophilia and has be eager to learn all about it and become involved with youth. She has been on the provincial chapter in Newfoundland since last year as youth director and is very excited to begin with the Nation Youth Committee. She hopes to one day, persue a career in the medical field.  April can be reached at aprilhart_05@hotmail.com.


Shaun Berstein (Ontario)

Shaun Bernstein is excited to join the Canadian Hemophilia Society National Youth Committee. As a journalism student, he loves talking to people, telling stories, and helping to raise awareness; all skills he hopes to bring to the table with the NYC. A severe hemophiliac from Toronto, Shaun is also serving as the youth editor for Hemophilia Ontario's new magazine. Shaun looks forward to being in touch with as many young hemophiliacs as possible and making sure their needs are being met by the committee. Currently, Shaun's life is taken over by school. The National Youth Committee and Hemophilia Ontario Youth ARE his spare time. You can reach him, anytime, at shaunbernstein@gmail.com

Ryan Brownell (Nova Scotia)
ryan.brownell@brownellnetworks.com

Ryan Brownell is a mild type A hemophiliac born, raised and currently living in Halifax, Nova Scotia. Formerly in the Commerce program at Saint Mary’s University, he is currently taking time off of school to focus on growing his own businesses which he started in 2005 when he graduated high school. Despite his busy schedule he always makes a point to get out to volunteer, and has been volunteering with the CHS and the Nova Scotia Chapter since June 2008. In his rarely found free time he enjoys socializing, taking his iPod for runs, taking his camera for walks, and dreaming.


Eddie Crosbie (Ontario)
eddie.crosbie.hirlehey@hotmail.com
My name is Eddie Crosbie. I live in Pickering, Ontario. I am studying for Professional Golf Course management and love sports. I have been involved in attending the chapter events for many years and now want to become an active member of the National Youth Committee. I have severe hemophilia factor A and am glad to be able to contribute to making a better future for the Canadian Hemophilia Society.

Martin Kulczyk (Québec) kulczykalpha@hotmail.com
Martin Kulczyk is a proud member of the National Youth Committee. As a young adult, he tries to sensitize the youth to the hemophilia cause. Being an administrator on the provincial board of directors as well as a delegate to the National Board, he has a broader view of the organization, which permits him to make enlightened and confident suggestions and decisions to help members of our community live a better life. Presently, in addition to being an active member of the CHSQ and the CHS, he is a graduate from an Aerospace Engineering Masters, a domain that interests him greatly. He’s looking forward to seeing you all at one of CHS social gatherings!

Maxime Lacasse-Germain (Co-Chair) (Québec)

Originally from Abitibi-Témiscamingue in northern Quebec, Maxime Lacasse Germain lives in Montreal. He completed a BFA in Art Education at Concordia University in 2007 and now works as a high school art teacher in Montreal. He was born with severe Hemophilia A. His interests at the moment include swimming, painting and learning sign language. Maxime wants to be involved as much as possible on different CHS committees. You can reached Max at max_lacasse_g@hotmail.com


Silvana Moran
(Manitoba) rad.moran@gmail.com
'Originally from El Salvador, Silvana Moran now lives in Winnipeg, Manitoba where she can be found cracking jokes and making people laugh (mostly at her). She's lived with Von Willebrand's Disease type 3 for all 23 years of her life and has been active in the community for close to 6 years. She graduated in 2009 with her BFA in graphic design and is currently designing t-shirts for a living. She hopes to one day be illustrating children's books and be a role model for young girls with bleeding disorders. She is extremely proud of the progress the National Youth Committee has made, and hopes to see more successes in the coming years.

Bojan Pirnat (Manitoba) bojanpirnat@hotmail.com


David Pouliot (Québec) david.pouliot@gmail.com
 
David Pouliot studied in computer science and mathematics.  Now, he's living and working in Montreal as a computer scientist in the field of public transportation. As a severe hemophiliac A, he has been involved with the organization since he started University in 2003. People say that, when he he wakes up every morning, he like to take some time to reflect on love, life and ginger bread.



Ryanne Radford
(Co-Chair) (Alberta) ryanneradford@hotmail.com

Ryanne Radford is a severe factor V Hemophiliac. Originally from Newfoundland she moved to Alberta 5 ago and is enjoying her life in the city of Calgary where she works as a freelance writer. Ryanne lives with her fiancé, Zane, who also has a family history of hemophilia, and their dog, Lily. Ryanne has a diploma in journalism and holds a degree in communications. She is very proud to be involved with the Canadian Hemophilia Society. Currently she is the co-chair of the National Youth Committee, Vice President of the Calgary Chapter and a member of the National Volunteer Development Committee. Please visit Ryanne's blog at http://hemophiliaisforgirls.blogspot.com


Justin Smrz (British Columbia) j_smrz@hotmail.com
Justin Smrz lives in North Vancouver, British Columbia where he is entering his third year at the University of British Columbia.  He is in the Bachelor of Science program majoring in Cell Biology and Genetics.  Justin has severe type A factor VIII deficiency and has attended Hemophilia camp for 15 years, the last 5 as a counselor.  Despite having Hemophilia, Justin enjoys participating in a wide variety of sports, his favourite being Ultimate Frisbee.  Justin is new to the National Youth Committee but is proud nonetheless to be a part of it.

Patrick Syriani
(Québec) patricksyriani@hotmail.com
Patrick Syriani lives in Montreal. Born with Severe Hemophilia A, he always wanted to serve the hemophilia community. Besides studying Finance at the HEC in Montréal (Business School), he is also a member of the National Youth Committee. Patrick is also an accomplished young sportsman. If he’s not playing basketball or tennis, he either sways his hips while he’s listening to music or while he’s dancing, which is, his main hobby.


 

Plan of action

In order to support, promote and address youth involvement, the National Youth Committee in 2010 will:

  • Organize provincial and regional youth meetings to discuss youth involvement and future youth activities
  • Present International PowerPoint presentations to regional and provincial AGM's
  • Organize youth activities in all CHS chapters/regions
  • Update the Youth Webpage on CHS Website
  • Maintain a Youth File Section in all issues of Hemophilia Today
  • Organize three Drive your car/Drive your care sessions in Toronto, Halifax and Winnipeg
  • Develop a manual on on Drive your car/Drive your care and on smart choices
  • Disseminate at clinics the youth package 
  • Host the third edition of the  National Youth Leadership Workshop
  • Establish a Pen Pal Program