Canadian Hemophilia SocietyNewfoundland and Labrador

Fall 2019

MAINLINE

this issue

President’s Message

Camp BLAST Highlights

Scholarship Information

CHS Engagement Campaign

Register for MyCBDR

Events in Fundraising

Don Wright Award

Aging with a Bleeding Disorder Conference Reflection

Vice-President’s Message

Contact Us

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Hemophilia Newfoundland and Labrador.

President’s MessageGordon Stokes

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I hope you all had a fantastic summer and fall. We had a wonderful time at this year’s Hemo-philia summer camp like always!

This past year has been great with regards to education and fundrais-

ing within our Chapter. It’s great to see everyone getting involved in our annual calendar draw, and the new fall bath bomb fundraiser that took place in November.I would also like to thank all members and their fam-ily’s who donated to the CHS engagement cam-paign in October.

I am looking forward to another year of great work and dedication with our awesome board members!

Our goal in 2020 is to find an opportunity to do a “just the guys weekend” with the kids and their dads/guardian/siblings with hopes of getting this funded by a pharma rep.

Keeping connected more then once a year is a challenge we face being spread out across our province so we are in search of ways to be able to connect more often, as I know my son and I (like many others) could use more of our hemo family bonding time. We hope to maybe grow this to a girls weekend for mom/daughters/siblings over time.

There will be some changes happening early January in our clinic nursing staff which I will make a post on our He-mophilia NL Facebook page to communicate/announce at a later date.

I’ll close by saying that I am looking forward to another great year and that I encourage everyone to join us on our social media page through Facebook. Facebook is a great way for us all to stay connected to each other.

President;Gordon Stokes

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Hello Everyone ,

Most years at Camp Blast, we find ourselves saying, “This was the best year yet!” and this was no exception. Our camp was once again a huge success, with a series of fun activities that catered to many ages, informational sessions, and important presentations. Special thanks to Jeannie Stokes for returning to the duty of organizing camp after Marcel realized that the would not be able to return this year.

This year, our Program Director is Angela Legge. She is certainly up for the challenge, and brings many good ideas to the table. Camp will be hed on the first weekend after Canada Day as usual [July 2-5, 2019]. Camp appli-cations will be sent out in the Spring.

Have a safe and happy winter season everyone.

Nicole BarrettDirector of Communications

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Scholarship InformationKimberly Randell

The Newfoundland and Labrador Chapter of the Canadian Hemophilia Society is proud to offer a $500 scholarship to a member of the society with an inherited bleeding disorder each year.

Our goal is to help members with bleeding disorders live life to the fullest. This includes supporting their pursuit of higher education and career development.

Applications for the 2019/2020 academic year were to be received by September 1, 2019. There was one application and the scholarship was awarded to Katie Ryland.

Congratulations Katie!

For further information on available scholarships For 2020-2021 and applications the follow links provided below.

HemophiliaNL.scholarship@gmail.comKimberly Randell 174 Pouchcove line Bauline,NL A1K 1E7https://www.hemophilia.ca/scholarships-newfoundland

These scholarships are not limited to undergraduate students. If you are going back to school to further your education by completing a Master’s degree or upgrade your knowledge, there could still be a scholarship available for you. Please contact us for details.

The James Kreppner Scholarship ProgramThe Canadian Hemophilia Society andPfizer also offers a scholarship of up to $5000. Please see the CHS website under the ‘Support and Education’ tab for more details.https://www.hemophilia.ca/james-kreppner-scholarship

Our Don Wright Award is a competitive prize of $1000 to thewinning K-9 classroom. Further info and submission dates will be published on our website and our facebook chapter page. There will also be flyers sent to all schools across NL. If someone wants a direct copy feel free to contact me. We award the $1000 prize on Hemophilia Day and will use the winning submission as advertisement for educational purposes also.

Hope to see you all soon at one of our planned events for our chapter in the new Year.

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Featured App:

MyCBDR Electronic Bleed Registry

By McMaster University

MyCBDR is a free, secure app for people with bleeding disorders or parents/caregivers in Canada to record home treatments.

It is now easy and fast it to report bleeds and treatments to your treatment centre via MyCBDR. This ensures your medical record is up-to-date regarding bleeds and treatments, and helps you get the best treatment possible.

Check out the new promotional video from CHS:

Click this text for digital editions, or if you are viewing on paper, search ‘MyCBDR’ on youtube.com

MyCBDR is now online in Newfoundland and Labrador

How to Register VIA Computer:

1. Go to www.mycbdr.ca/nycbdr/Acoount/Login

2. Click on “ New User”

3. Complete information in the “ My Details” section.

4. View the ‘ terms and conditions” and then accept.

5. Click on submit.

How to Register using the free app:

1. Download the MyCBDR app from the Apple Store

or from the Google Play store.

2. click on “ Create an account” .

3. Complete the information in the “My details” section.

4. View the “ terms and conditions” and then accept.

5. Click on submit.

CHS Member Engagement Campaign

Hi everyone,

As mentioned at camp, this fall the Canadian Hemophilia Society launched their member engagement campaign to help stimulate fundrais-ing and participation for our par-ent society. Each provincial chapter directed their own “Campaign Cham-pion” to help run the campaign on a provincial level.

I was selected to be the campaign champion for our chapter, and would like to elaborate a little about my experience. With the help of the chs, each chapter was given a tool set to create their own page and track their donations. Our page for this cam-paign was launched on October 7, raising $540 with 15 supporters.

There was a lot of learning curves with this campaign, and its not always easy to keep pulling funds for dona-tions. However, for a small province and the level of support that the page got we did raise a fair amount. I’d like to thank everyone who shared the link to the page, made donations, or even just spread awareness. I believe the page is still open to donations, so feel free if you would still like to contribute to do so. The link can be found con-stantly through our facebook page.

Adam Snow

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Events in FundraisingKerilynn Mercer

I hope everyone is having a great winter; the weather has certainly been in our favor! I just want to send in a little update on our recent fundraising efforts. Our chapter participated in a calendar draw for the month of September. We printed 500 tickets and happily sold ALL of them. This was a very successful event and we want to thank everyone who supported us. It was great fun to see the winners each day. We want to send out a big congratulations to Jessica Fowler of St. John’s on her $500 win, which was drawn for on the last day of September.

For our next fundraising endeavor… we tried something new! We joined forces with Salt Water Bath Bombs of St. John’s to offer bath and body products at great prices all while raising funds for our chapter. Orders were placed on November 15th and returned to us by November 30th – just in time for Christmas! This fundraiser offerred many wonderful options for Christmas gifts, stocking stuffers, etc., and earned a little money for our society as well.

As always, if you have any questions, suggestions, or fundraising ideas, please let us know.

Walk for HemophiliaNicole Barrett

Our 2019 Walk-for-Hemophilia, Cen-tral location was hosted this year by the Barrett’s in Glovertown.

We had a great turn-out! This was a success and seemed to be enjoyed by everyone who came by with donation forms and support for our society. Thank you to everyone for your gen-erosity and support for our cause.

We are looking forward to hosting again this coming June. More details to follow in our Spring newsletter.

-24/7 Emergency Hotline with live agents.

- Engraving with globally-accept-ed medical terminology.

-Emergency family notification service

Why MedicAlert?It is the only emergency medical ID service plan to provide:

No Child Without is a charitable program offerred through MedicAlert that provides a free MedicAlert ID and service plan to eligible children between the ages of of 4 and 14 through their schools. It keeps their medical information readily avail-able for everyone, including teachers, in case of an emergency.

For 14-18 year olds, Students First is a subsidized pro-gram with similar services.

Go to: https://www.medicalert.ca/no-child-without

*The Hemophilia Society was not paid to endorse this outside organisation. You are seeing this ad because we believe in the importance of MedicAlert for our members.

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The Don Wright Award

$1000 Award for Your

Classroom!*Eligibility: Newfoundland and

Labrador Schools, Grades K to 9.Skit

Essay

Art ExhibitVideoPresentationDeadline to Enter: March 31

For knowledge of Hemophilia

and other inheritedbleeding

disorders

The Don Wright Award for Knowledge of Hemophilia and other inherited bleeding disorders has been introduced to honour the memory of Don Wright, a Newfoundlander who founded the Newfoundland and Labrador chapter of the Canadian Hemophilia Society.

Expectations: Upon acceptance of the award, the submission of the winning class will become the property ofthe Canadian Hemophilia Society. The winning submission may be displayed to the general public through avariety of public and (or) private media and participants should be comfortable with allowing their names and

their submission to be used by the Canadian Hemophilia Society in any public relations venue.

Winner will be announced on April 17, Provincial Hemophilia Day

*Entry guidelines, sub-mission details, and

other information can be found on our web-

site and Face-book page.

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Hi all!

Another summer has ended, and we are knee-deep in another school year. Winter has been kind so far, but if you are like me, you are looking at that snow shovel and wondering... Having compiled the

newsletter for several years - back when it didn’t look so good - it dawns on me that I’ve never contributed to one before! What can I say?

More than anything, I want to thank you all. I cannot express how much the support of this community has en-riched our lives. Nicole and I appreciate you all, and I am honoured to serve the community in whatever way I can.

The community is thriving! Whether it’s a social media campaign to raise money for CHS National, the Don Wright Award engaging students across the province in the challenges of bleeding disorders, or the myriad of local level fundraising activities, the dedication of this commu-nity continues to amaze. I am grateful to you all, and I am proud to be a part of this amazing team. We exist to serve your needs.

To that end, if there are needs in the community that you know about, do not hesitate to reach out. We can’t fix your sink, but there are a number of ways that we can sup-port families in need. Supporting the community is why the board exists.

Thanks again,

Mike Barrett

Final Remarks from our Vice PresidentMichael Barrett

Aging with a Bleeding Disorder ConferenceCharlottetown, PEINovember 1 - 3, 2019

There is a saying that goes “ Grow old along with me, the best is yet to be”. But growing old with a bleeding disorder is far from rosy.

As everyone ages everyone will see a gradual deterioration in lifestyle and health. We will all be-come more and more vulnerable to illness and falls. But there are things we can do to help us live a long and healthy life. It’s all about lifestyle and self care.

Lifestyle, staying active, being physically ac-tive and avoiding risky activities. Maintain a safe and clutter free environment around us. Eating healthy and making good consumption choices, avoiding alcohol certain drugs and smoking. Good oral and eye care. Keep those social connections, stay con-nected with family and your local hemophilia chap-ter. Become more involved with social activity groups you are interested in. Good mental health can have a very positive effect on physical health.

Self care, educate yourself and stay informed on the most up to date treatments. Monitor your own health and know your own body. Seek advice from medical professionals and support networks. Insist on an annual checkup with your family doctor and insist on medical screening associated with aging. The earlier you can catch any issue the far better the outcome will be. I know for myself, with my annual clinic visit, I visit my family doctor to have bloodwork done at the same time. Also, always, always, always, if you are undergoing any medical procedure contact the clinic before hand, it could save your life.

Stay healthy and happy, your family will thank you for it.

Norman and Ruby Locke

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Executive and Board

President: Gordon Stokes

Vice President: Michael Barrett

Secretary: Colleen Barrett

Treasurer: Jeff Jerrett

Camp Coordinator: Angela Legge

Director of Communications: Nicole Barrett

Director of Fundraising: Kerilynn Mercer

VWD and Rare Bleeding Disorders: Jeannie Stokes

Scholarships: Kimberly Randell

Youth Director: Adam Snow

Canadian Hemophilia SocietyHelp Stop the Bleeding

Contact UsCanadian Hemophilia Society Newfoundland and Labrador Chapter PO Box 112Glovertown, NL A0G 2L0

e-mail: HemophiliaNL@gmail.com Telephone: 1–709-235 0573

ClinicJill MacDonald, RNPrince Phillip Drive, Janeway SiteRoom 2J755Phone: (709) 777-4388Fax: (709) 777-8060

Newfoundland and LabradorMedical HealthlineConfidential and Free1-888-709-2929TTY: 1-888-709-3555e-mail: yourhealthline.ca

National OrganizationOffice: Montreal, QCPhone: 1-800-668-2686E-mail: chs@hemophilia.cahttp://www.hemophilia.ca

Thanks to our Sponsors:

We remind everyone that the Canadian Hemophilia website, www.hemophilia.ca holds a wealth of information on all types of bleeding disorders. The site also contains a forum where you can ask questions or view answers to questions. Thanks to the work of David Page, the site is continuously updated and expanded. We encourage you to visit it regularly. This Newsletter and Hemophilia Today are also available at http://www.hemophilia.ca. The Newfoundland and Labrador Chapter of the Canadian Hemophilia Society does not endorse the use of any one medi-cal product/device, nor does it have the medical expertise to do so. We encourage people to make an informed decision after consultation with their treating physician, based solely on the medical benefits and risks of the product/device itself. Brand names of treatment products are provided for infor-mation only. Their inclusion is not an endorsement of a particu-lar product or company.