Canadian Hemophilia SocietyNewfoundland and Labrador

Fall 2018

MAINLINE

HappyHolidays!

this issuePresident’s Message

Camp BLAST

News from Clinic

Register for MyCBDR

Events in Fundraising

Scholarships

Youth News

Don Wright Award

Blood Donation Survey

Vice-President’s Message

Contact Us

p. 2

p. 3

p. 4

p. 5

p. 5

p. 6

p. 6

p. 7

p. 8

p. 8

p. 9

I hope you are all enjoying the beautiful fall weather we have been having, but Old Man Winter is starting to show that he is only around the corner. Please let’s ensure we all stay safe during this winter season and the upcoming holidays.

I would just like to say how honoured I am to have been elected to be the President of CHSNL during this year’s AGM. I know that this will be a learning curve for me and I promise to do whatever I can for this Chapter. This learning curve however will be much easier with such a fantastic / dedicated board elected to work side by side with

me. I would like to thank them all for agreeing to volunteer their time and efforts when it comes to fundraising and raising awareness for hemophilia and other inherited bleeding disorders. There has been some great work already undertaken this year when it comes to fundraising / scholarships / communications & awareness. Let’s continue to keep up the great work!

This year’s BIG 50th Anniversary at Camp Blast was a great success. It was amazing looking back through all the memories of past camps and hearing the stories. We have so much to be thankful for! There have been so many great leaders in the past who have shaped this Chapter into what we have today.

We are working on trying to organize an activity that gets the kids / members together in the upcoming months. Once more information is available on this we will communicate it through our Facebook Page. Our local treatment center is currently starting to utilize CBDR (Canadian Bleeding Disorders Registry) to sup-port patient care, approved research and monitoring of factor concentrate utilization. I strongly encourage all patients / caregivers to review the information / benefits associated with using MyCBDR. MyCBDR is the system used by patients and/or their caregivers who are on home treatment. It is linked directly to the CBDR at your treatment centre. Please check out https://www.hemophilia.ca/mycbdr/Watch for more information coming out on this topic soon through our Facebook Page “Hemophilia Newfound-land and Labrador”

I encourage everyone involved with the society to join us on our Facebook group. It is a great way to stay con-nected to our community and to share your stories.

Again, thanks to everyone for all their hard work and dedication to our chapter. If anyone has any ideas on ar-eas where we could improve our support to the members of our bleeding community I would love to hear them. I can be reached at gord.stokes@gmail.com or (709) 691-2729.

Thanks;Gordon Stokes

President’s MessageGordon Stokes

2

3

KEEP CURRENTJoin us on Facebook

Our society relies more and more on social media, especially Facebook, to share important information in real time.Be part of the conversation and don’t be left out. Visit our page today. Search:

Hemophilia Newfoundland and Labrador.

Hello Everyone ,

First of all I would like to say that I am super excited to take on the role of Director of Program-ming once again and that last year’s camp was a huge success. Special thanks to Jeannie Stokes for making it so memorable. We won’t forget your tireless dedication.

Next year’s camp will be held on the first weekend of July [July 4-7] as per usual. Camp applications will be sent out in the Spring.

I am super excited to start planning camp for next year and I can’t wait to see everyone again.

Have a safe and happy winter season everyone.

Marcel McDonald Director Of Programming

4

NEWSCLINIC

FROM

Hi everybody, I wish everyone all the best of health as we ap-proach this festive season! The clinic is busy as always. On the pediatric side of our program Dr. Lynette Bowes and Dr. Paul Moorehead are still equally involved in our clinics. Dr. Lisa Goodyear is also involved when she is on call.On the adult side Dr. Natasha Pardy and Dr. Jac-queline Costello are interim directors of the Bleeding Disorder Program. When someone comes to clinic, you will be seen by whomever is assigned clinic that day. By now, some of you may have seen both of these Doc-tors. The Bleeding Disorder clinic is on the 4th Mon-day of the month. This is where Colleen is in attendance too. Dr. Pardy and myself see patients every Monday afternoon as well. We are in clinic 6. We are hop-ing over time we will be able to see more of you. We recognize that it is often difficult to make the trip into St. John’s. We are starting to gradually do more tele-healths. We would prefer to see you in person but this is an alternative for special circumstances. As said many times before, if you receive noti-fication for surgery please call and let us know as plans need to be made. The phone number is 709-777-4388. Colleen Jones Down remains our physiothera-pist for both of our programs. The social worker in our program, Clarke Dale, will be retiring on November 30th, 2018. We wish him well in his retirement! He will be missed.He has been part of our Hemophilia Program for many years. East-ern Health is working on filling his position. I will keep you posted. A nurse, Olga Boland, has been hired on a temporary part time basis to replace me in that part time position. She is also quite busy doing another job within Eastern Health. She works part time in pre admission at the Health Sciences Centre. You may see her when you have to come to be checked for surgery! We welcome her into our program. She has been a big help trying to enter infusion data regarding factor

usage into Canadian Bleeding Disorder Registry ( CBDR).Infusion data was put into CHARMS before but this program has gotten too old and Canadian Hemophilia Society ( CHS) is no longer supporting this one, instead its CBDR. As patients come into clinic appointments we are getting people’s consent for CBDR. As you can imagine, the process is slow. An individual witnessed consent is re-quired due to our privacy laws. YOU can register: via computer or using the app (available for MacOS devices and Android). When we see you we will ask you to sign consent, your information will be transferred to us. We will then add this to your profile and add clinic information. This can’t be done unless there is a signed consent. The program is password protected by the patients and staff at the clinic for privacy. Olga and I will be inputing factor product usage for patients with mild hemophilia who occasionally receive product for procedures, as they are not familiar with the process. This can’t be done though unless there is signed consent. Hopefully most people who receive factor 3 times per week or more can enter their transfusion history them-selves. You just need to tell the program how many vials you picked up from the blood bank. The program will then allow you to enter dates when you infused from your own home supply. As this program gets more advanced we will be able to do pharmakinetics . You will also be able to docu-ment if extra treatment was needed for a bleed, etc. and say where the bleed was. This information will be able to be recorded in “real time” but We need your help to make this happen. Please see the instructions to the right to register yourself for MyCB-DR. I hope this information helps. CHS has a lot of information available regarding this. There is also a help desk on this website that can help you get started. Wishing everybody Happy Holidays and the very best of Health!

Best wishes,Jill MacDonaldBleeding Disorder Program @ 777 4388.

5

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.

Events in FundraisingKerilynn Mercer

A huge thank you to all those who have made our fundraising efforts very successful – we couldn’t have done it without your support!

We have been doing really well with fundraising this fall! Our chapter just clued up another Calendar Draw for the month of September which was a great success! Thanks to everyone who helped out with that.

Ethan Mercer (with the help of his Mommy and Daddy) also raised $472 with his cold plate sales, selling 118 cold plates. The Mercer’s are hoping to continue their fundraising efforts over the winter.

There are also plans in the making to (hopefully) do an online auction this winter or spring if all goes as well… Please keep an eye out for information on this event over the next few months.

6

ScholarshipsKimberly Randell

Happy Fall!

My second-favourite season, as Mother Nature is so colourful, and full of beautiful scenery.

Hope everyone is enjoying it as much as we are!

The Canadian Hemophilia Society of Newfound-land and Labrador reviewed all applicants submit-

ted. I am pleased to take this opportunity to an-nouncemence this year’s Scholarship Recipients:

Katie Ryland of PasadenaJeffrey Snow of Lewisporte

Congratulations! Wishing you both a successful academic year!

A New Award! Good News for Youth!Adam Snow

With all the business over the past year preparing for our 50th anniversary at camp this sum-mer and all the other amazing adventures during my first year on the board, I’m happy to have worked on this project - The Don Wright Award, over the summer. As a board we have decided to implement this school award to raise awareness of Hemophilia and all other inherited bleed-ing disorders during the month of march, while announcing the winner on world hemophilia day on April 17th each year. This award is in honour of our founding chapter member, Don Wright, who 50 years ago brought groups of people together to form what is today the Newfoundland And Labrador Chapter of the Canadian Hemophilia Society. [Please see page right]

7

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.

8

It gives me great pleasure to re-turn to the role of Vice President of our chapter!

I am looking forward to working with our fantastic board to advocate on your behalf, plan activities andprovide comprehensive information about inherited bleeding disorders.

I have received a number of inquiries in the past few months about medical information bracelets/jewellery and I strongly encourage everyone with a serious medical condition to wear one. There are many excellent products and styles avail-able or you can have basic information engraved on regular jewellery. Those of you with children between the ages of 4 and 14 should check out Medic Alert’s ‘No Child Without’ program (https://www.medicalert.ca/no-child-without) that provides free medical ID and a service plan that ensures medical information is readily available and accurately communicated in an emer-gency. If you have any questions or concerns feel free to contact me at hemomom@hotmail.com or 709-535-0337.

Warm regards,

Colleen

Final Remarks from our Vice PresidentColleen Barrett

Canadian Blood Donation Survey

and

Safety, Acceptance, Fairness, and Equality (SAFE Project): Acceptable

Risk and Donor Selection

Our society has been personally invited to participate in a study. It involves an online survey that should take about 15 minutes to complete. This study, conducted by research-ers at McGill University and the University of Nottingham (funded by the Canadian Blood Services), seeks to better understand people’s attitudes related to blood dona-tion and the current limits on accepting blood from men-who-have-sex-with-men (MSM). In recent years, the policy on accepting blood from MSM has been relaxed somewhat and further changes are contemplated. Although not all ques-tions may seem related to the topic of blood donation, we hope that it will give researchers and policy-makers a better idea of a number of things that influence attitudes. It is completely anonymous. If you would like to participate in this study, please follow the link below.

https://www.surveymonkey.com/r/HP8HKZJ

9

Executive and Board

President: Gordon Stokes

Vice President: Colleen Barrett

Secretary: Michael Barrett

Treasurer: Jeff Jerrett

Camp Coordinator: Marcel MacDonald

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.