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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:
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
Carrie Fleet (New Brunswick) carriefleet450@hotmail.com
My name is Carrie Fleet, I am 23 years old and originally from Grand Manan Island, N.B. I am currently living in Saint John, N.B., working as a Registered Nurse on a General Surgery floor. I have mild von Willebrand disease diagnosed at age 5. I enjoy spending time at the gym, hiking, and traveling. I am looking forward to working with NB’s youth to make a brighter tomorrow for our youth with bleeding disorders.
Ben Glazebrook (Nova Scotia) benglazebrook@live.ca
My name is Ben Glazebrook, 20 Years old, from Halifax, Nova Scotia. I am an avid Extreme Sports enthusiast! I enjoy everything from going Diving on the Great Barrier reef to playing Professional Paintball here at home. I especially love the outdoors, camping, hiking, trail riding and Single Track Biking. I Graduated from High School in 2009, and am heading for a 3 year Business Administration Diploma In the new year. I have been Volunteering with the Nova Scotia Chapter since as long as I can remember, and will continue to do so! I also Volunteer with our Bleeding Disorder Summer camp, and love it! My Brother has Severe Hemophilia A, but I do not.
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.
Mojtaba Khezry (Ontario) mkhezry@uoguelph.ca
My name is Mojtaba Khezry, 25 years old from TCOR, Hemophilia Ontario chapter. I am currently engaged with my career in research and I am finishing my masters of science in biophysics; I intend to continue the same career path and obtain a PhD in the Field of life sciences. I am honored to be accepted as new member of youth committee for the Canadian Hemophilia Society. Through my experience with board of directors in my chapter I have learned a great deal information which could be transferable and implemented to youth for stronger youth committees. I aim to collaborate with my colleagues from all over Canada to bring exciting new healthy programs for youth in the future.
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 reach Max at max_lacasse_g@hotmail.com
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
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.John Schmitke (Manitoba) john@sheepeatgrass.ca
Although Hemophilia is a serious blood disorder, you would never know this when you are around John. John takes care of his Hemophilia as ordinarily as other people would routinely brush their teeth in the morning, it’s just something he has to do. I have been dating John for almost 4 years and even I forget he has Hemophilia sometimes. He tries not to let it get in the way of everyday life, or the things he likes to do like play flag football, exercise at the gym, etc. Often when we are going out for an evening John will take a treatment with him or have to do one before we leave, especially if he has a bleed or something is sore. One thing I have learnt about John and his Hemophilia is that he does not take the medication he has for granted, he is very grateful and has told me about how the medication has progressed. I haven’t been around any other hemophiliacs as long as I have been around John but I would say that he is probably not your average haemophiliac in the way that he handles his disorder.Holly Valenta (Ontario) x.hollyelizabeth.x@hotmail.com
Hi there my name is Holly Valenta. I live in Waterloo, Ontario, and I have been involved with my chapter since 2003. My younger brother, Ryan, has hemophilia factor 8 deficiency mild and was diagnosed after having his tonsils removed at age 8. He has a genetic mutation as hemophilia does not run in my family as my mother is not a carrier and I am an undetermined carrier. Hemophilia has quickly and increasingly become one of my biggest passions in life and I have made it one of my goals to do as much as I can for the greater good of this wonderful cause. A brief background of my involvement of both SWOR and CHS includes my attendance of Camp Pinecrest for children with inherited bleeding disorders since 2000. I have had the upmost privilege of being both a camper and more recently a staff for the past 3 years. I have also been able to acquire the role of Spirit Leader for the past two years and am looking forward increasing my involvement in the program. Also, I have recently been elected to the board of directors for the south western region chapter in Ontario and have also been serving on the National Youth Committee for CHS since the middle of 2011. I have enjoyed every opportunity that SWOR and CHS have given me and I am looking forward to becoming a nurse when I graduate University. I hope that one day I can impact the life of someone else, just as the nurses at the HTC’s have impacted my life.Plan of action
In order to support, promote and address youth involvement, the National Youth Committee in 2011-12 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
- Disseminate at clinics the youth package
- Host Youth Leadership Workshops
- Create a youth blog
- Establish a Pen Pal Program
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