Inside This Issue . . .

Program Update Pg.2

CWOR Christmas Party Pg.3

Clinic Corner Pg. 4 1st Annual Hunter Terpstra Co-Ed Charity Volleyball Classic Pg. 5

Travel Tips Pg. 6

2nd Annual Liam Barbour Charity Golf Classic Pg. 7

Fantastic Fundraising! Pg. 8

2nd Annual CWOR Bike-a-thon! Pg. 9

Niagara Triathlon & Duathlon Pg.10

Central West Regi nRegional Update

Spring 2007 Publication of the Central West Region of Hemophilia Ontario

Central West Ontario Region Annual General Meeting

CWOR held its Annual General Meeting on March 25th, 2007 at the Royal Botanical Gardens in Burlington. There was a good turn out from both new and old members. This year three educational sessions and a Tai Chi segment were integrated into the meeting. Hemophilia Secretary, Theresa Almonte presented on the importance of keeping medical diaries, and Nurse Wendy Seroski spoke on the importance of managing pain from a pediatric perspective. In addition, Regional Service Coordinator, Alex Plumb presented a segment on fitness which was followed by a Tai Chi session guided by Linda Horsky from the Taoist Tai Chi Society of Hamilton. A special thanks is extended to both Theresa Almonte and Wendy Seroski from the Hamilton-Niagara Hemophilia Clinic, and also to Linda Horsky for their great work!

Left: Nurse Wendy Seroski speaks about managing pediatric pain in her presentation.

Right: Hemophilia Secretary Theresa Almonte presents information on the importance of the CHARMS program.

Below: Linda Horsky from the Taoist Tai Chi Society of Hamilton doing Tai Chi with AGM attendees.

CWOR BOARD CHAIR WELCOME!

Greetings on behalf of the 2007-2008 CWOR Board of Directors. I would personally like to welcome all of our members, both those who are returning as well as those who have just come on board! This year will prove to be successful as we have many new and exciting programs and initiatives occurring. This summer we have both our annual Summer BBQ and Education Day as well as our annual CWOR Golf Tournament in the works. In addition, board member

nd Brad Barbour will also be holding the 2 Annual Liam Barbour Golf Classic. As a board we are hoping to provide more family support as well as looking into offering support and programming for women as well as carriers which will hopefully turn out to be quite successful! Lastly, as in previous years, we will also be holding various fundraising events such as our famous Red White and You days, as well as a Bike-a-thon and Triathalon.

With all of these endeavours in mind, I hope to see both new and old faces out at our CWOR events. It is through the support of our members that events are enjoyable! Thank you and all the best!

Sincerely,Linda D'AddarioCWOR Board Chair

he Step-by-Step Program is Tdesigned to provide parents with information and support during the different stages or “ s t e p s ” o f t h e i r c h i l d ’ s development.

Initially, parents w i l l b e welcomed into t h e

b l e e d i n g d i s o r d e r s community by receiving Info Kits, information packages that contain educational material, information about the CHS, and useful items offered to the family by the HTC nurse coordinator at the time of diagnosis. Follow-up packages will be presented after one year and before the child starts school.

A new section of the CHS website has been developed for the Step-

by-Step Program at: www.hemophilia.on.ca/stepbystep/en

Parent to Parent - an online program that allows parents to connect with another

parent to share experiences and strategies.

Forum - an online bulletin board where parents can read about specific topics

related to raising a child with a bleeding disorder and share experiences, tips and success stories.

Just the Guys - a place where a dad can learn more about

how to take an active role in the care of his child with a bleeding disorder.

Please take the time to go online and check out this great new program. You may find the answers to questions you have. You could also lend support to another parent who has questions of their own.

Page 2

Hello CWOR!

My name is Venanzio D'Addario, and I am the CWOR programming chair. I have been involved with the society for about 4 years now, and have enjoyed many of the programs that we have offered. This year we will be holding our summer party at Marineland in Niagara Falls, Ontario on Sunday August 12, 2007. We will be serving hotdogs and hamburgers and everyone is asked to bring something for a potluck. Further information will be mailed out in July. Please respond to our RSC Alex if you will be attending this function.

In September the Just for Guys event will be taking place at Camp Ki-Wa-Y. Please keep an eye out for the Just the Guys registration package which will be mailed out and also available on the web at .

We are also hoping to hold a women's night out/carrier’s information session and a parent's workshop. The annual Winter/Christmas party will be taking place December 2, 2007 at the Americana water park in Niagara Falls Ontario. More information will be forwarded at a later date. Again, please respond to our RSC Alex at the office if you plan on attending.

We also have some fundraising events going on this year. On Saturday July 21 2007 a triathalon will be held in

thGrimsby. On August 4 2007 the CWOR Hemophilia golf tournament will be held. November is Hemophilia month and we will be holding a Red Day event. CWOR is also planning a comedy night for sometime in September. Other events will be forwarded as they come along.

I thank you for your support in advance.

Venanzio D'AddarioCWOR

www.hemophilia.ca

Page 4

Hemophilia Nurse Coordinator’s Maternity Replacement!

As many of you are already aware, I am planning for a precious new addition to my family! In preparation of this much-anticipated arrival, I will begin my maternity leave as of March 29, 2007.

During my absence, the clinic has recruited a nurse to take over my duties for the next 12 months. I am very pleased to announce that Liane Butt will be joining the hemophilia team as our nurse coordinator, working collaboratively with Wendy Seroski. Liane comes with a wealth of experience; she was on staff at London Hospital in the oncology/hematology ward for 9 years and has spent the past 5 years at McMaster Hospital working in the Pediatric ward.

Please join me in extending a warm welcome to Liane!!

I look forward to seeing everyone in the New Year. In the mean time, I wish you and your families good health…….See you in 2008!

Yours truly,Kay Decker Hemophilia Nurse CoordinatorHamilton-Niagara Regional Hemophilia Program

As part of the Canadian Hemophilia Society's Passport to Well-being modules the following individuals provided specific presentations for the members of CWOR at their AGM:

1. Charting Your Course: Home Infusion DocumentationTheresa Almonte Hamilton-Niagara Regional Hemophilia CenterProgram Secretary2. Making Bleeding Disorders Less PainfulWendy Seroski, RN Hamilton-Niagara Regional Hemophilia Center3. Destination Fitness

Alexsandra PlumbCWOR Regional Service Coordinator

Theresa Almonte, gave an interesting presentation on Home Infusion Documentation. She gave an historical overview and a concise explanation of the CHARMS database utilized by the comprehensive care team. She presented the critical reasons and benefits for home infusion documentation:· Who: all individuals or families that self infuse are expected to provide treatment records.

· How: Methods for documenting infusions, both paper and electronic versions

· What: reviewed what essential information to documented for each infusion as well as some additional information that provides more details for the team

· When: reviewed that individuals on home infusion send diary information on a timely basis and what this means

· Why: o To help you manage you factor concentrate inventory

o To help you keep track of your prophylaxis regimeo To help you assess treatment of bleedso To help you identify target jointso To help you manage your hemophilia care needs

In summary, accurate and timely diary submissions help us to give you/your child the best care possible.

Wendy Seroski, Hemophilia Nurse, gave a presentation on Making Bleeding Disorders Less Painful. The topics covered in this presentation were:1. The physiological process of painpain has both physical and psychological aspects

2. Pain and the child with a bleeding disorder3. Types of painacute and chronic4. Methods to assess pain5. Factors that influence pain6. How to help a child in paina. Medical interventions

b. Psychological interventionsc. Healthy, active lifestyled. The role of the familye. The role of the comprehensive care team7. Summary

a. Pain should not go untreated b. Assessing your child's pain is the first step to

good pain management c. Remember the three Pspharmacological,

physical and psychological interventionsd. The use of ice can be very helpful in reducing

pain e. Gentle exercise can be useful to help protect

muscles from injury and encourage healing in injured areas

f. Distraction is a simple and very effective way to reduce pain for infants and children

g. Seek medical advice if you are concerned

The key points: • Lots can be done to manage and treat pain

• You are the best coach and teacher in helping your child cope with pain

You play an important role in managing your child's health

We would like to thank the members and staff of CWOR for the opportunity to present on these important topics. It was a pleasure to present to the members in an engaging and dynamic environment.

Sincerely,

Theresa Almonte and Wendy Seroski

Pediatric Pain Websites· About Kids Health

Hospital for Sick Children (HSC)

· Pain, Pain, Go Away: Helping Children with Pain Izaak Walton Killam Children's HospitalDalhousie UniversityHalifax, Nova Scotia, Canada

· Pain in infants, children and adolescents· Department of Pediatrics

University of SaskatchewanSaskatoon Health Region

H

Http://www.aboutkidshealth.ca/ofhc/PNHome.asp

http://pediatric-pain.ca/ppga/ppga.html

ttp://www.usask.ca/pediatrics/services/pain/

Be sure to have safe travel plans in place such as:

Bleeding Disorder Clinic location for the place(s) you are traveling to These can be found at:

Remember to carry your

If you are going to be flying and are carrying factor concentrate, be sure to

contact the clinic well in advance for your travel letter. The clinic has followed

the advice of Transport Canada in composing the travel letter and it is designed

to expedite your airport screening process. However, it is advantageous to

always check prior to your flight for any changes in regulations. The following websites

can be helpful:

Transport Canada:

Canadian Air Transport Security Authority (CATSA):

Please Note: Factor never packed with your luggage so as to avoid any loss and also to maintain proper temperature control.

and

Www.wfh.org/2/8/8_1_Passport_Directory.htm

Http://www.tc.gc.ca/en/menu.htm

Http://www.catsa-acsta.gc.ca

current wallet card. It is important to attend your

annual review appointment with the clinic to ensure that your wallet card

is kept up-to-date.

concentrate must be carried on board in proper cooler containers

Travel Tips

Page 6

Page 8

Fantastic Fundraising!Derek Woollam, Special to the Beaver

HERE'S HOPING

Toddler Hunter Terpstra bounces a balloon with his grandfather, custodian Rick Bomford, during an information session on hemophilia at St. Thomas Aquinas Catholic Secondary School. Hunter's mom Heather spoke about his severe case of Hemophilia.

Aquinas fundraiser impacts toddler's lifestyle

David Lea

Feb 28, 2007

Saint Thomas Aquinas Catholic Secondary School has pulled together in support of one of its extended families.

Through an exceptional fundraising response last Friday, Hunter Terpstra, the two-year-old grandson of the school's custodian Rick Bomford, will be able to go to Camp Wanakita in the Haliburton area -- something that will impact his life forever. Terpstra was born with severe hemophilia, a genetic disorder where a person's blood does not clot properly. The camp he will attend, when he reaches age seven, will help him manage his condition.

"Our school is known as the little school with a big heart, and for Valentine's we'd like to do something that gives back to the community," said Catherine Wright, school chaplain and organizer of the fundraiser. Over 200 St. Thomas Aquinas students crowded into the gymnasium each paying $2 to attend an information session about Hemophilia and Camp Wanakita. It happened last Friday as the original Valentine's Day date was postponed thanks to a snowstorm. With money from this and other fundraising, done earlier in the week, Wright estimates $1,400 was raised -- far above the $400 goal. Of it, $800 will go to Hemophilia Ontario and the rest to Camp Wanakita.

Monique Lackey, Program Chair for the Central Western Ontario Region of Hemophilia Ontario, explained the importance of the camp.

"A lot of our kids have bleeding disorders and they need to learn how to self-infuse, so by going to camp, they learn how to do it themselves so they don't become dependent on doctors or their parents," she said. "They also have interaction with people who have a condition like theirs, who understand what it's like." Lackey says fundraisers are essential for kids like Terpstra who attend the camp. "There is a limit of how many kids we can send each year due to financial reasons. So with the financial support of the school it just gives a chance for more kids to be able to go."

As student volunteers collected donations and blew up balloons to get the presentation ready, Terpstra bounced a softball over and over again, laughing all the while like any toddler. The only evidence of his condition were his family members who kept a close eye on him as he played, jumping to his side when he stumbled. "If he falls or goes over on his ankle there'll be a problem," said Bomford, Terpstra's grandfather.

Terpstra's mother Heather says her son's condition is so severe that he doesn't even have to injure himself to be at risk. "He can just get a bleed spontaneously. So spontaneously he can just start bleeding into his muscles, his joints, he gets soft tissue bleeds. Anything that would normally be a bruise for you or I could be very bad for him." Despite the seriousness of her son's condition Heather wants her son to enjoy the same pleasures all children experience. "I worry, but I try to let him be a little boy too. Obviously, if he falls and is crying I would run to him quicker and make sure he's okay, and if he bumped his head I would have to really monitor that situation," said Heather. "But you have to let him be a little boy because otherwise he's not going to develop normally." Heather believes her son will get some of that normal childhood experience at the camp because besides helping him with his disorder, the camp also offers activities like archery and kayaking. "It's relaxed and instead of being in a hospital setting you get to learn from your peers as well as the nurses there," she said.

Bomford's joy at the turn out for the fundraiser was matched by a cautious optimism for the future. Gesturing to the crowd, he said, "It's going to a good cause. Hopefully down the road, with lots of these fundraisers, they'll come up with a cure. It's a long shot, but let's hope."

KidsHelping

KidsWalk-a-thon!

A big thank you and congratulations is extended to Wee Care Day Care in Niagara Falls. This past May 15th, 2007 Wee Care Day Care held the Kids Helping Kids Walk-a-thonin support of CWOR member Luciano Calabrese, who attends the day care. The event raised $2646.20 and is still growing! A job well done and greatly appreciated! THANK YOU!

2nd Annual CWORBike-a-thon!

CWOR’s 2nd Annual Bike-a-thon was held on Saturday June 2, 2007 in the Niagara Region. There were 19 cyclists that participated in this event with cyclists ranging 12-77 years of age. Many thanks are extended to the McCormack, Stutz and DiMartino families for their support and fundraising efforts!

The total funds raised thus far is $3000.00 and is still rising! Thank you again to all who participated and supported this fantastic event.

Please keep in mind that we have set a date for CWOR’s 3rd Annual Bike-a-thon. This great event will be held on May 31st and or June 1st of 2008. Please mark these dates on your calendar!!! We grew from 2 cyclists last year to 19 this year. It is our hope that we will double this number for next year. Once again, THANK YOU!

Page 9

Above from Left to Right: Maria and Sam DiMartino, Matthew D’Addario, and John and Mary Vandelaar.

Below: Group of riders with Maria and Sam DiMartino and CWOR’s Cathy Stutz in the centre.

Niagara Triathlon &Duathlon!

When: Saturday July 21, 2007

Where: Nelles Beach, Grimsby

Time: Registration from 2:00 - 3:15 Official Start Time is @ 3:30

Accomodations

! Casablanca Winery Inn - (905) 309-7171, tool-free (877) 446-5746 or

! Super 8 - (905) 309-8800

! Comfort Inn (Stoney Creek) - (905) 560-4500

www.casablancawineryinn.com

Directions

! QEW Niagara to Bartlett Ave in Grimsby. North to Lake Street. West on Lake Street to Parking on the left.

Page 10

For more information, please visit Http://www.trisportcanada.com/niagara.php OR contact Alex Plumb @ (905) 522-2545

***Please make sure you complete your pledge forms and registration forms prior to the race***Pledge forms have been attached to this newsletter for your convenience

NOTE: Early registration fee (prior to race) = $43Late registration fee (day of race) = $53

Central West Region

Niagara Triathlon & DuathlonSaturday July 21, 2007

CWOR Golf TournamentSaturday August 4, 2007

Summer BBQ and Education Day

2nd Annual Liam Barbour Charity Golf Classic

Monday August 20, 2007

Canadian Hemophilia Society

For more information, please visit the CHS website at,

http:\\www.hemophilia.ca

Central West Region - Hemophilia Ontario75 Hunter St. E, Suite 102Hamilton, ON L8N 1M4

905-522-2545 or 1-800-267-8563aplumb@hemophilia.on.ca

Hemophilia Ontario

Camp WanakitaJuly 1 - 15

HOY Summer TripAugust 15 - 19

For more information, please contact Justine Casserly @

1-888-838-8846

Have you moved? Please let us know!

Just cut out this change of address form and mail it to the CWOR office.

Name:______________________________

Address:____________________________

City:________________________________

Province:__________

Postal Code:________________

Comments?Suggestions?

Need Information?

WE’D LOVE TO HEAR FROM YOU!

Please contact Alex Plumb, Regional Service Coordinator

@ (905) 522-2545.