Lifeblood magazine autumn digital

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P1 | www.nhfcentralohio.org AUTUMN 2014 its the Hemophilia Walk 2014! BLOOD RUN & FALL FAMILY FEST pg. 14 OOD LIFE BL A PUBLICATION OF THE CENTRAL OHIO CHAPTER OF THE NATIONAL HEMOPHILIA FOUNDATION

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Transcript of Lifeblood magazine autumn digital

Page 1: Lifeblood magazine autumn digital

P1 | www.nhfcentralohio.org

AU

TUM

N 2

014

its the Hemophilia Walk

2014!

BLOOD RUN & FALL FAMILY FESTpg. 14

OODLIFEBLA PUBLICATION OF THE CENTRAL OHIO CHAPTER OF THE NATIONAL HEMOPHILIA FOUNDATION

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Nationwide Children’s Hospital Homecare

Nationwide Children’s Hospital Homecare is the only hospital-based pediatric home health agency in the central Ohio area. The Infusion Pharmacy partners with the Hemophilia Treatment Center at Nationwide Children’s to provide factor for pediatric patients in the state of Ohio.

Services Provided:• Infusion Pharmacy – Factor Program• Pediatric Home Medical Equipment• Retail Medical Equipment and Supplies on site• Intermittent (short-term) Nursing

• Private Duty (long-term) Nursing• Skilled Therapy Services (OT, PT, Speech)• Hospice and Home-based Palliative Care Services

for children with life-limiting illnesses

(614) 355-1100 | (800) 466-2727NationwideChildrens.org/Homecare

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LETTER FROM THE CHAPTER PRESIDENT Fall is full of fun!

CONTENTSLIFEBLOOD

CALENDAR OF 2014 EVENTSSave the date!

MY LIFE, OUR FUTUTREWhat’s your genotype?

PAGE

MEET THE FIRST JOAN FELLOW – DR. GARY WOODS!New addition at Nationwide Children’s Hospital

HEMOPHILIA WALKHave you signed up yet?

EDUCATION FORUM/WILDLIGHTSNew event!

MUSCLE MATTERSClasses safely sculpt men’s bodies

18202324272931

HCV TRIAL RECRUITS BLEEDING DISORDERS PATIENTSNew clinical trial

MEDSCAPE EDUCATION ACTIVITY FOCUSES ON CLINICAL MANAGEMENT CHALLENGESNew resource for healthcare professions

INHIBITOR STUDY STRESSES SCREENING IMPORTANCEAre you at risk?

AUTUMN 2014

At CVS Caremark, we’ve been helping

families like yours for more than 30 years.

Our caring patient support helps ensure

safety, convenient access and satisfaction.

www.CVSCaremarkSpecialtyRx.com

Diane Linker, Client Relations Manager [email protected]

Mary Ellen Mackey, Field Sales [email protected]

©2014 Caremark. All rights reserved. 75-30419a 022014

Trust the Experience

NEW MEDSCAPE LEARNING OPPORTUNITY FOR CLINICIANSOnline education

PREGNANCY IN WOMEN WITH BLEEDING DISORDERS OR VON WILLEBRAND DISEASE.Guest article by Karalee Stemen

BLOOD RUN & FALL FAMILY FESTDare to run?

ANNUAL DINNER AT DER DUTCHMANRound up your family!

LIFEBLOOD | Autumn 2014 | P3

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KOGUS-49334A_M2_Jrnl_ad.indd3-28-2013 4:50 PM Dan Capobianco / Vincent Jeffrey

Client CodeClient

LiveOverall TrimBleed

# of Colors

KN10000213ABayer/Kogenate

7.125” x 9.75”8.375” x 10.875”8.625” x 11.125”

4–CMYK

Job info

NoneNotes Fonts

Interstate (Regular), Helvetica Neue LT Std (75 Bold, 55 Ro-man, 45 Light)

ImagesBayer_Icon_4C.ai (72.01%)

Inks Cyan, Magenta,

Yellow, Black

Fonts & Images

Saved at

None

from dcapobianco3847 by

Printed At

Bayer and the Bayer Cross are registered trademarks of Bayer. © 2013 Bayer HealthCare Pharmaceuticals Inc. All rights reserved. 04/13 KN10000213A

We may be able to help.Bayer offers a range of programs that can help you navigate insurance questions about

your hemophilia A treatment. If you’re having issues with co-pays or gaps in coverage, we

may be able to offer assistance. Speak with one of our case specialists to find out more.

Call 1-800-288-8374 and press 1 to speak to a trained insurance specialist!

Having issues with co-pays or gaps in coverage for your hemophilia A treatment ???

S:7.125”

S:9.75”

T:8.375”

T:10.875”

B:8.625”

B:11.125”

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2014 CALENDARThe Central Ohio Chapter of the National Hemophilia Foundation is dedicated to providing education, advocacy, and support for people with bleeding disorders.

September

12-14September

for Hemophilia A, Hemophilia B,

28

www.hemophilia.org/walk

october 10 november 5 december 14Education Forum followed

by Wildlights at the Zoo!

Please RSVP by October 31st

Sign up to run... If you dare!www.bloodrun5k.com

Contact Information P. 614.985.3752 | E. [email protected] | www.nhfcentralohio.org

See pg. 14

See pg. 18

See pg. 16

See pg. 12-13

Sign up today!

Annual Dinner at Der Dutchmanin Plain City, OH

LIFEBLOOD | Autumn 2014 | P5

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P6 | www.nhfcentralohio.org

President’s Corner

Paul hemingway

“The time is NOW to commit to taking an active role in each of these events and support YOUR Chapter. ”Blazing red and orange leaves dangle from tree limbs. Warm, woolen sweaters and boots reappear from their summer hiatus. A crisp evening wind gently ushers in the autumn season. Farm festivals, pumpkin spice goodies, and of course, Buckeyes football signal that it’s fall in Ohio. Autumn marks a return to school for the kids…and a return to sanity for us, their parents. Is there a better season or anywhere you’d rather be than autumn in Ohio?

For our Central Ohio Hemophilia Chapter, there is also no better season than the fall. It’s an important time for us to drive awareness for our bleeding disorders, raise money for our programs, build our community, and celebrate what we’ve achieved this year. I know autumn is a busy time for most families, but as you consider our schedule of events, I would challenge you to take an active role in each. In doing so, you’ll create lifelong memories for your family, and show them the importance of giving back to those in need.

Hemophilia Walk – It’s our most important fundraising event of the year. It’s an event that anyone can support – friends, family, and neighbors – to raise awareness and funds for our community’s unique needs. If you haven’t created or joined a team, please register at www.hemophilia.org/walk under “OH, Columbus.” If you haven’t reached out to your friends and relatives to donate to your cause, please send that email. What can your employer do to help? What can businesses you frequent do to help? Have you asked? I think you’ll be surprised at the support you’ll receive, even by those with zero ties to our bleeding disorder community, if you only ask. Even our team of nurses and doctors at the HTCs of Nationwide Children’s Hospital and OSU Medical Center have created a Walk team to help raise money for our Chapter. Did you see that Billy the Blood Drop also created a Walk team? I look forward to celebrating your success with you on Sunday, September 28 at our 6th Annual Hemophilia Walk.

Blood Run – It’s bigger and better this year and on its way to becoming one of Columbus’ best Halloween events. For us, it’s a fun, seasonal, fundraising event for our friends and neighbors to attend. The Blood Run is a night 5k run (or walk) in the Arena District featuring: free makeovers from monster movie makeup artists, live entertainment (Google: GlowPop), and an after-party at Boston’s Pizza Restaurant. Not a runner? Come dressed up to participate in fall activities and entertainment at the start/finish line. Check it out on Facebook by searching for ColumbusBloodrun. Join us and invite your friends to run or walk Friday, October 10…if you dare! cont. page 9

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I LIKE TO STAY ACTIVE.I HAVE NO PLANS TO CHANGE THAT.BeneFix is the most prescribed recombinant factor IX treatment FDA approved for hemophilia B.†

n Demonstrated bleed control in patients with moderate and severe hemophilia B n Established safety record n BeneFix Rapid Reconstitution (R2) Kit—designed for patients, by patients—offers a full range of dosing options

ImpoRtAnt SAFEty InFoRmAtIon FoR BEnEFIX• BeneFixiscontraindicatedinpatientswhohavemanifestedlife-threatening,immediatehypersensitivityreactions,includinganaphylaxis,totheproductoritscomponents,includinghamsterprotein.

•CallyourhealthcareproviderrightawayifyourbleedingisnotcontrolledafterusingBeneFix.

•AllergicreactionsmayoccurwithBeneFix.Callyourhealthcareproviderorgetemergencytreatmentrightawayifyouhaveanyofthefollowingsymptoms:wheezing,difficultybreathing,chesttightness,yourlipsandgumsturningblue,fastheartbeat,facialswelling,faintness,rashorhives.

•Yourbodycanmakeantibodies,called“inhibitors,”whichmayinterferewiththeeffectivenessofBeneFix.

• Ifyouhaveriskfactorsfordevelopingbloodclots,suchasavenouscatheterthroughwhichBeneFixisgivenbycontinuousinfusion,BeneFixmayincreasetheriskofabnormalbloodclots.ThesafetyandefficacyofBeneFixadministrationbycontinuousinfusionhavenotbeenestablished.

•SomecommonsideeffectsofBeneFixarenausea,injectionsitereaction,injectionsitepain,headache,dizzinessandrash.

WhAt IS BEnEFIX?BeneFix®CoagulationFactorIX(Recombinant)isaninjectablemedicinethatisusedtohelpcontrolandpreventbleedinginpeoplewithhemophiliaB.HemophiliaBisalsocalledcongenitalfactorIXdeficiencyorChristmasdisease.

BeneFixisnotusedtotreathemophiliaA.

please see brief summary of full prescribing Information on next page.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

*BeneFixwasapprovedFebruary11,1997.†IMSNationalPrescriptiondataOctober2013.

Download your free HemMobile™ app.HemMobile helps you keep track of your infusions and any bleeds you might have.

App Store is a service mark of Apple Inc. Android and Google Play are trademarks of Google Inc.

Join Our Hemophilia Community

Manufactured by Wyeth Pharmaceuticals Inc. Marketed by Pfizer Inc.

BUS640301-01 © 2014 Pfizer Inc. All rights reserved. Printed in USA/April 2014

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Brief Summary

See package insert for full Prescribing Information. This product’s label may have been updated. For further product information and current package insert, please visit www.Pfizer.com or call our medical communications department toll-free at 1-800-934-5556.

Please read this Patient Information carefully before using BeneFix and each time you get a refill. There may be new information. This brief summary does not take the place of talking with your doctor about your medical problems or your treatment.

What is BeneFix?

BeneFix is an injectable medicine that is used to help control and prevent bleeding in people with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease.

BeneFix is not used to treat hemophilia A.

What should I tell my doctor before using BeneFix?

Tell your doctor and pharmacist about all of the medicines you take, including all prescription and non-prescription medicines, such as over-the-counter medicines, supplements, or herbal remedies.

Tell your doctor about all of your medical conditions, including if you:

• arepregnantorplanningtobecomepregnant.Itisnotknownif BeneFix may harm your unborn baby.

• arebreastfeeding.ItisnotknownifBeneFix passes into the milk and if it can harm your baby.

How should I infuse BeneFix?

The initial administrations of BeneFix should be administered under proper medical supervision, where proper medical care for severe allergic reactions could be provided.

See the step-by-step instructions for infusing in the complete patient labeling.

You should always follow the specific instructions given by your doctor. If you are unsure of the procedures, please call your doctor or pharmacist before using.

Call your doctor right away if bleeding is not controlled after using BeneFix.

Your doctor will prescribe the dose that you should take.

Your doctor may need to test your blood from time to time.

BeneFix should not be administered by continuous infusion.

What if I take too much BeneFix?

Call your doctor if you take too much BeneFix.

What are the possible side effects of BeneFix?

Allergic reactions may occur with BeneFix. Call your doctor or get emergency treatment right away if you have any of the following symptoms:

wheezingdifficulty breathingchest tightnessturning blue (look at lips and gums)fast heartbeatswelling of the facefaintnessrashhives

Your body can also make antibodies, called “inhibitors,” against BeneFix, which may stop BeneFix from working properly.

Some common side effects of BeneFix are nausea, injection site reaction, injection site pain, headache, dizziness and rash.

BeneFix may increase the risk of thromboembolism (abnormal blood clots) in your body if you have risk factors for developing blood clots, including an indwelling venous catheter through which BeneFix is given by continuous infusion. There have been reports of severe blood clotting events, including life-threatening blood clots in critically ill neonates, while receiving continuous-infusion BeneFix through a central venous catheter. The safety and efficacy of BeneFix administration by continuous infusion have not been established.

These are not all the possible side effects of BeneFix.

Tell your doctor about any side effect that bothers you or that does not go away.

How should I store BeneFix?

DO NOT FREEZE BeneFix. BeneFix kit can be stored at room temperature (below 86°F) or under refrigeration. Store the diluent syringe at 36° to 86°F (2° to 30°C). Throw away any unused BeneFix and diluent after the expiration date indicated on the label.

Freezing should be avoided to prevent damage to the pre-filled diluent syringe.

Different storage conditions are described below.

Product labeled for Room temperature Storage Store at 2° to 30°C (36° to 86°F). If you have the product kit labeled for room temperature storage, it can be stored at room temperature (below 30°C or 86°F) or in the refrigerator (2° to 8°C or 36° to 46°F).

Product labeled for Refrigerator Storage Continuous refrigeration [2° to 8°C (36° to 46°F)] If you have the product labeled for storage in the refrigerator (2° to 8°C or 36° to 46°F) and you have not taken the kit out of the refrigerator, then the expiration date printed on the package still applies. You can store the product at room temperature (below 30°C or 86°F) for up to 6 months or until it has reached its expiration date, whichever comes first.

If you have taken the product kit labeled for storage in the refrigerator out of the refrigerator and stored it at room temperature (below 30°C or 86°), then use the product within 6 months from the time you took the product out of the refrigerator or until it has reached its expiration date, whichever comes first. If you cannot remember when you took it out of the refrigerator, then subtract one year (12 months) from the date that is printed on the end flap of the carton package. The date you get is your new expiration date. Throw away any product that has gone over the new expiration date.

BeneFix does not contain a preservative. After reconstituting BeneFix, you can store it at room temperature for up to 3 hours. If you have not used it in 3 hours, throw it away.

Do not use BeneFix if the reconstituted solution is not clear and colorless.

What else should I know about BeneFix?

Medicines are sometimes prescribed for purposes other than those listed here. Do not use BeneFix for a condition for which it was not prescribed. Do not share BeneFix with other people, even if they have the same symptoms that you have.

If you would like more information, talk to your doctor. You can ask your doctor for information about BeneFix that was written for healthcare professionals.

This brief summary is based on BeneFix® Coagulation Factor IX (Recombinant) Prescribing Information LAB-0464-8.0, revised November 2011.

Manufactured by Wyeth Pharmaceuticals Inc. Marketed by Pfizer Inc.BUS420219-01 © 2012 Pfizer Inc. All rights reserved. July 2012

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“ Hemophilia doesn’t stop me from having fun.”

—Charlie,* 7 years old, loves windy days

Walgreens Infusion Services— bleeding disorder support to help you stay healthy and active

• A personal team of bleeding disorder experts

• Help, day or night

• Complete educational support

• Broad insurance coverage

To learn more, call 866-436-4376.En español, llame al 800-456-1923.

Taking beautiful care of you.

* Hypothetical patient profile. Walgreens Infusion Services locations are ACHC accredited. HHA #20881096, HHA #20885096, HHA #299991678, HHA #299992580 ©2013 Walgreen Co. All rights reserved. 13WIS0117.25-NC

BD-Ad_3x5_Hemophilia of NC_FNL-080513.indd 1 8/6/13 3:32 PM

Annual Dinner at Der Dutchman – Our November tradition! Take an active role this year and introduce yourself to those you may not recognize. Have you met a newly diagnosed family? Be sure to invite them to join us! Our annual dinner could be an evening for old friends to reconnect, as well as an opportunity to make new friends in our community. New for 2014: we will have a raffle. You will have the opportunity to win cool prizes like tickets to Disney, a hot air balloon ride for two, a customized cornhole set, and more…all for the cost of purchasing a $5 raffle ticket! Plan to join us for yummy food and fellowship on Wednesday, November 5.

Education Forum and Wildlights at the Zoo – An opportunity to learn, network, and have fun with other hemophilia families. This new education opportunity will take place at the Columbus Northwest Marriott in Dublin (same location as FAMOHIO) on Sunday, December 14 -- Save the Date! You must attend this half day education event in order to receive your FREE tickets and parking pass to see Wildlights at the Zoo.

Our fall season is full of great activities. The time is NOW to commit to taking an active role in each of these events and support YOUR Chapter. Start with the Hemophilia Walk and Blood Run. It’s easier than you think; all you need to do is invite those around you to participate. You’ll feel glad that you gave back to our community, and have fun in the process. Let’s go Bucks!

Paul

2013 blood run

LIFEBLOOD | Autumn 2014 | P9

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A Better Approach to Infusion Care

For more information, call:

Rob AlexanderBioScrip Hemophilia Patient Advocate614.230.9844

bioscrip.com

n National leader in providing customized,convenient infusion therapy

n Individual and family educationand support

n Full line of factor products andassay availability

Dedicated hemophilia team, including:n Nursen Pharmacist n Reimbursement specialistn Patient care coordinatorn Patient advocate

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Through a generous donation by Joan Wallick, Nationwide Children’s Hospital has established the Joan Fellowship in Pediatric Hemostasis-Thrombosis. This fellowship will allow Ms. Wallick’s hope that training and knowledge in hemostasis and thrombosis will expand beyond the established treatment centers and immediate metropolitan areas. Establishing this fellowship is “a wonderful thing and I feel so lucky that I was able to do so,” explains Ms. Wallick who is the mother of former Central Ohio Chapter of NHF Board President, Jim Wasserstrom.

This year’s recipient of the fellowship is Dr. Gary Woods from Virginia Beach, Virginia. The Chapter is excited to welcome Dr. Woods to the Central Ohio hemophilia community!

Dr. Woods recently completed his Pediatric Hematology/Oncology/Bone Marrow Transplant Fellowship at Nationwide Children’s. “Interestingly, I started my fellowship almost certain I was going to be a pediatric oncologist with a mild interest in hematology and hemostasis,” Dr. Woods explains. “As my fellowship progressed, I found myself gravitating to hematology because of the nuances in the care of pediatric hemostasis and hemophilia medicine. I enjoyed the challenge that comes with managing these conditions since no two patients or families are exactly alike. After caring for families that suffer

Meet Dr. Gary Woods

from hemophilia, venous thromboembolism, and other hemostasis related conditions, I truly understood how these diagnoses are life altering. Since I enjoyed caring for these kids and their families and we both know there is a shortage of physicians for these kids, I felt it was a perfect fit for me.”

The Joan Hemostasis and Thrombosis Fellowship is a year of training for Dr. Woods that will allow him to become well-seasoned in the complex management of children with bleeding disorders, as well as allow him to develop his research abilities and find a niche to continue his research. He is excited about the possibility of being involved with our Chapter and has already committed to helping with our Hemophilia Walk and attending Family Camp this September. Dr. Woods is a self-proclaimed movie buff, as well as an exercise enthusiast. He and his wife, Jess, enjoy staying active together with their 1.5 year old yellow lab named Mable and their 4 year old chocolate labradoodle named Miley.

“ I e n j o y e d t h e c h a l l e n g e t h at c o m e s w i t h m a n a g i n g t h e s e c o n d i t i o n s s i n c e n o t w o pat i e n t s o r fa m i l i e s a r e e xa c t ly a l i k e . “

LIFEBLOOD | Autumn 2014 | P11

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P12 | www.nhfcentralohio.org

WHAT IS A TEAM?

A team is a group of people who come together to support the

Hemophilia Walk. It can be made up of family, friends, neighbors, classmates, co-workers

and others. Forming a team is a fun way to

participate and to raise money for the Walk.

And it’s easy to do!

Step 1: REGISTERRegister online at the Walk website: hemophilia.org/walk. Click OH, Columbus

Step 2: SET A FUNDRAISING GOALAs a Team Captain, you should lead by example. Set an ambitious and achievable fundraising goal.

Step 3: INVITE MEMBERSAsk your family and friends to join you as a team member on your Walk team. Ask them to sign up online under your team name and to make a donation to the team.

Step 4: RAISE FUNDSEncourage your contacts to donate online through the Walk website or by collecting checks and cash that can be turned in on Walk day or directly to the chapter office. Send e-mails, share your efforts on Facebook and Twitter, ask local businesses for their support…if you don’t ask, the answer will always be “no!”

Step 5: LET’S WALK!Bring all funds collected to the Walk and turn them in at the registration table. Walk with your team members and other community members to support the bleeding disorders community. Have fun!

HEMOPHILIA WALK 2014

$25,623Raised*

64% of our goal

$40,000 Goal

At the Westerville Sports Complex325 N Cleveland Ave, Westerville

Check in is 9:00AM and the walk is a 5K (3.1mi)www.hemophilia.org/walk

Sunday, September 28

*as of 8/20/2014

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P14 | www.nhfcentralohio.org

ACTIVITIES INCLUDE:

• Blood Run 5K at 7:30pm• Activity booths open from 5:30-8:30pm

10.10.14fall family fest&

5:30pm - 8:30pm

FUNFAMILY

FRIENDLY!

DON’T MISS THE PERFORMANCE BY Ryan "Glow-Pop" Rosinski

• Trick-or-Treating - Be sure to dress up!• Outdoor glow stick dance party• Cookie decorating• Face painting• Magic shows• Fortune telling• Carnival games• And FREE pizza from Boston’s the Gourmet Pizza

COOL!P14 | www.nhfcentralohio.org

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At CSL Behring, we are committed to providing treatments and supportive services that make a meaningful difference in the lives of people with bleeding disorders and those who care for them.

We set out on this journey with you more than a century ago, starting with the development of treatments for those with rare and serious diseases.

As we look to the future, we see the promise of new innovations and opportunities —just as we always have.

Over the years, we have never lost sight of what matters most: you and the countless others who inspire our efforts every day.

©2013 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USAwww.CSLBehring-us.com COA13-08-0045 9/2013

Heritage

Community

Innovation

NHF & Kroger: Community Awards ProgramEvery time you shop at Kroger and use your Kroger Plus card we get points which Kroger will then distribute as funds to our Chapter.

This is an easy, free, mindless way to support our Chapter. T o R e g i s t e r and Start Earning Points For Our Chapter, Visit krogercommunityrewards.com

Be sure to have your Kroger Plus card handy and register your card with our

YOUR CHAPTER Number: 26965

New Registration? Go to krogercommunityrewards.com Click on ‘SIGN UP TODAY’ in the ‘New Customer?’ box. Sign up for a Kroger Rewards Account.

Check your email inbox for confirmation of your registration.

You’re now ready to log in and link your rewards card to our Chapter.

Click on ‘Edit Kroger Community Rewards information’.

Register your card with YOUR Chapter Number: 26965

Don’t have a Kroger Plus Card Yet? They’re FREE, and available at the

customer service desk at any Kroger.

LIFEBLOOD | Autumn 2014 | P15

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P16 | www.nhfcentralohio.org

Frustrated with the challenges of your bleeding disorder? Want to connect with other people that can relate? Have you searched to the end of the internet and are still looking for answers? Ever wonder what your rights are as a consumer? What about the changing healthcare climate?

Tentative Agenda:1:00pm – Registration Open1:30pm – Opening General Session with NHF’s CEO, Val Bias2:15pm – How to be a Savvy Consumer with Michelle Rice and NYLI participant, Lucas Rice3:15pm – Breakout Education Sessions – 3 options*4:15pm – Breakout Education Sessions – 3 options*5:15pm – Group Dinner6:00pm – End of the Education Forum and travel to Wildlights at the Columbus Zoo*Younger kids will have an option to watch a movie in a nearby room with professional babysitters during the breakout education sessions. Pre-teens and teenagers will have an optional breakout education session to attend.

Education Forum and

Wildlights at the Zoo!Date: Sunday, December 14, 2014Time: 1:00PM-6:00PMEducation Forum Location: Columbus Marriott Northwest, 5605 Blazer Pkwy, Dublin, OH 43017 Same hotel as 2014 FAMOHIOWildlights Location: The Columbus Zoo, 9990 Riverside Drive, Powell, OH. Please note that you must attend the Education Forum to receive your free tickets to Wildlights.

Mark your calendar for Sunday, December 14, 2014 to attend the Central Ohio Chapter of the National Hemophilia Foundation’s

Please join us for this half-day event with national and local speakers to discuss what YOU and your family deal with on a day to day basis. After our day of education activities and a group dinner, each attendee will receive FREE passes to see the Wildlights at the Columbus Zoo, along with one FREE parking pass per family.

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make knowledge hereditary

My life, Our Future is a nationwide campaign for progress in hemophilia. Leaders in our community have come

together to offer a free genotyping test, so that you may gain a deeper understanding of your hemophilia today,

while helping to advance the breakthrough treatments of tomorrow.

mylifeourfuture.org

My Life, Our Future:Genotyping for Progress in Hemophilia Date: Time:Location:

Join us

H E M - 1 0 0 4 3 7 0

We are excited to announce that 1,000 people have enrolled in My Life, Our Future! The number marks a significant milestone in achieving our goal of genotyping as many people in the U.S. with hemophilia A and B as possible. 

By participating, you can help our community make knowledge hereditary. Your genotype can provide meaningful information about your hemophilia today, including identifying your unique mutation. More than 61 new mutations have already been discovered through the program. Genotyping may also accelerate the scientific breakthroughs of tomorrow. Once 5,000 people have enrolled in My Life, Our Future, scientists will be able to apply to research the data and samples.

My Life, Our Future enrolls 1,000

With a quick test, you can contribute to a brighter future for generations to come. Visit MyLifeOurFuture.org for more information. My Life, Our Future is currently available at Nationwide Children’s Hospital; contact Elizabeth Varga at (614) 722-3695 or [email protected] for more information.

NHF CEO, Val Bias, will be at our Chapter’s Education Forum on Sunday, December 14 to present about My Life, Our Future. Please plan to join us for this special presentation. 

Already been genotyped? Share your experience and become a Voice for Progress!

participants

LIFEBLOOD | Autumn 2014 | P17

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P18 | www.nhfcentralohio.org P18 | www.nhfcentralohio.org

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Identification of Patient/CaretakerMentors & Other Preferred Sources of Information in Bleeding Disorders; Response Requested

Your Navigator in ReachingCustomized KOL SolutionsSM

CONTACT: Rose Ríos, MPHP: 908-912-8980 • E: [email protected] • W: www.kolcomm.net

KOLComm, LLC, a market research company based in New Jersey, is requesting your help in completing a 10 minute survey. The purpose of this study is to understand the challenges of living with bleeding disorders and issues related to the condition and how patients and caretakers support each other. Our primary goal is to identify patients and caretakers that act as public

advocates in the bleeding disorders communities within the US and Puerto Rico.

Please use the link below to take the survey:https://www.research.net/s/PatientCaretaker

LIFEBLOOD | Autumn 2014 | P19

Grifols Factor Savings Card ProgramsApply for a card and start reducing your out-of-pocket factor costs today:

855-831-2090 ALPHANATE Savings Card Program

Help Desk

Call

www.alphanatecard.comALPHANATE Savings Card Program

Website

Visit

OR855-355-2574

AlphaNine SD Savings Card Program Help Desk

Call

www.alphaninecard.comAlphaNine SD Savings Card Program

Website

Visit

OR

www.grifolsusa.com

COA11-0214Solvent Detergent Treated/Virus Filtered

INTRODUCING

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P20 | www.nhfcentralohio.org

Investigators of a new clinical trial for people with both chronic hepatitis C viral (HCV) infection and bleeding disorders are currently recruiting new patients. HCV trials often exclude patients with conditions such as hemophilia, which makes this new study noteworthy and relevant to the bleeding disorders community.

The Phase 2b, multicenter trial, “Efficacy and Safety of Ledipasvir/Sofosbuvir Fixed-Dose Combination and Sofosbuvir + Ribavirin for Subjects with Chronic Hepatitis C Virus and Inherited Bleeding Disorders,” is being sponsored by Gilead Sciences. In February 2014, Gilead filed a New Drug Application with the US Food and Drug Administration for ledipasvir (LDV)/sofosbuvir (SOF), a fixed-dose combination therapy for genotype 1 HCV. Both drugs are direct-acting antivirals. LDV is an NS5A inhibitor, a drug that disrupts nonstructural proteins HCV needs to replicate. SOF is a nucleotide analog polymerase inhibitor, which blocks polymerase, an enzyme that provides instructions for making copies of HCV RNA.

The purpose of the study is to determine the efficacy, safety and tolerability of treatment with LDV/SOF fixed-dose combination for participants with genotypes 1 and 4 HCV infection, and SOF + ribavirin for participants with genotypes 2 and 3 HCV infection.

This trial is recruiting people exclusively with inherited bleeding disorders and chronic HCV infection (either mono-infected or HIV-1/HCV co-infected).

Learn more about the study, including eligibility information and recruitment sites, by going to clinicaltrials.gov.

HCV Trial Recruits Bleeding Disorders Patients

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A new, online learning opportunity is now available through Medscape for clinicians involved in the treatment and management of hemophilia. Clinical Advances in Hemophilia: Management for Life will include a series of educational activities provided by leading bleeding disorders clinicians.

Clinical Advances in Hemophilia: Management for Life is presented through a strategic collaboration by the Perelman School of Medicine at the University of Pennsylvania, the National Hemophilia Foundation and Medscape Education Hematology.

The series offers education in a variety of engaging formats. Activities will benefit clinicians interested in both current and emerging approaches for overcoming barriers to the optimal management of patients with hemophilia. After completing these activities, available for one year from their upload date, those eligible may receive continuing education (CE) or continuing medical education (CME) credits.

New Medscape Learning Opportunity for Clinicians

The first two activities in the series are available:

“A Nursing Perspective on Improving Outcomes for Patients with Hemophilia” CE Susan Karp, RN, MS; Brenda Riske, MSN, MBA, MPA; Kim Schafer, RN, MSN; Susan L. Hunter, RN, BSN CE Released: 04/23/2014; Valid for credit through 04/23/2015

“Management of Patients with Hemophilia” CME Patrick F. Fogarty, MDCME Released: 03/21/2014; Valid for credit through 03/21/2015

To learn more and to register free of charge go to Medscape.org. Once registered you may access Clinical Advances in Hemophilia: Management for Life.

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P24 | www.nhfcentralohio.org

“Current Challenges in Managing Hemophilia,” the latest online educational activity from Medscape, became available on Tuesday, May 20, 2014. It is intended for hematologists, pediatricians, nurses, and other healthcare professionals who manage patients with hemophilia. The goal of the program is to increase the knowledge, skills and competence of clinicians, to facilitate optimal, individualized management of hemophilia. The activity features experts in the management of hemophilia who provide insights based in their clinical expertise and experience.

This latest activity is part of Clinical Advances in Hemophilia: Management for Life, a series of educational activities provided by leading bleeding disorders clinicians. The series is presented through a strategic collaboration by the Perelman School of Medicine at the University of Pennsylvania, the National Hemophilia Foundation and Medscape Education Hematology.

Medscape Education Activity Focuses on Clinical Management Challenges

After completing these activities, available for one year from their upload date, those eligible may receive continuing education (CE) or continuing medical education (CME) credits:

“Current Challenges in Managing Hemophilia” CME/CE Patrick F. Fogarty, MD; Keith Gomez, PhD, MRCP, FRCPath; Andreas Tiede, MD, PhDCME/CE Released: 05/20/2014; Valid for credit through 05/20/2015

To access this and other available educational opportunities go to www.medscape.com. Once registered you may access Clinical Advances in Hemophilia: Management for Life.

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Results from a six-year study of patients with hemophilia A and B produced interesting findings. The Hemophilia Inhibitor Research Study (HIRS) enrolled 1,163 patients from 17 federally funded hemophilia treatment centers (HTCs). One of the goals was to predict which patients were at highest risk for development of inhibitors, antibodies to infused factor.

“A Study of Prospective Surveillance for Inhibitors Among Persons with Haemophilia in the United States,” was published in the March 2014 issue of Haemophilia. The lead investigator was Michael Soucie, PhD, Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC) in Atlanta.

A central laboratory performed periodic inhibitor tests using blood samples and genotyped the subjects. In all, 3048 inhibitor tests (some patients were screened more than once) were conducted. The main findings were:

Inhibitor Study Stresses Screening Importance

• All people with hemophilia are at risk for developing inhibitors • One-third of newly developed inhibitors were found in people with non-severe hemophilia• One-half were older than 5 years old• Six out of 10 people with hemophilia with an inhibitor had no symptoms• 23 new FVIII inhibitors were identified• 431 distinct mutations were genotyped, 151 of which had not previously been reported

HIRS investigators and CDC researchers determined that individuals with hemophilia of all ages were at risk for developing an inhibitor. Further, CDC now estimates that approximately 60% of people with an inhibitor have no symptoms. Without regular screening, a significant number of these patients may not be aware of it until they experience severe bleeding.

The CDC concluded that patients with hemophilia receiving care in federally funded HTCs will be tested yearly for an inhibitor by the CDC Division of Blood Disorders laboratory as part of Community Counts, its new blood monitoring program.

Source: CDC

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Novo Nordisk Inc., 800 Scudders Mill Road, Plainsboro, New Jersey 08536 U.S.A.

SevenSECURE® and Changing Possibilities in Hemophilia® are registered trademarks of Novo Nordisk Health Care AG.© 2013 Novo Nordisk Printed in the U.S.A. 0513-00015474-1 May 2013

When you or your child has a bleeding disorder, the costs can add up quickly. SevenSECURE® is a valuable tool that may help you with health insurance, educational grants and scholarships, health and fi tness memberships, and reimbursement assistance for medical and dental expenses. And it’s now available online, so support is always a click away.

support that may help you change the possibilities in hemophilia

Discover support with SevenSECURE®. Visit ChangingPossibilities-US.com to learn more about the program and enroll today.

CHRIS FENNICKSChris has hemophilia A with inhibitors

S:7”S:10”

T:8.375”T:10.875”

B:8.875”B:11.125”

NOSV3J1482_CPiH_Patient_Ad_FULL_r6_PP.indd 1 5/31/13 12:05 PM

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“Muscle chisel” is an all-guy workout class that encourages men with bleeding disorders to focus on fitness. It’s a chance to sweat, socialize, have fun and learn how to exercise safely.

“The class gets me together with others who have faced issues around hemophilia,” says Barry Haarde, 48, a cross-country cyclist and computer technician with severe hemophilia A from Woodlands, Texas. “For me, the connection with others is the No. 1 thing about the class.”

And for people with bleeding disorders, exercise is essential. Not only does it improve your cardiovascular health and build muscle, it also strengthens joints and helps prevent bleeds.

The class participants, who range in age from 18 to 60, follow along as a trainer guides them through drills modified to accommodate their individual abilities. They lift weights, practice noncontact boxing moves and other low-impact cardiovascular exercises, and work their core muscles. These moves are performed to the sounds of classic soul, Michael Jackson, Katy Perry and other high-energy music. All the exercises are specially selected to appeal to guys.

Texas rootsFor the past three years, muscle chisel classes have been held annually at the Texas Bleeding Disorders Conference, organized by the National Hemophilia Foundation’s (NHF’s) Lone Star Chapter. The class is financially supported by the Blood Brotherhood Program, a partnership between the Lone Star Chapter and Hemophilia Federation of America.

Muscle chisel has captured a loyal following. The average attendance has been about 15 men. “This class has had the highest number of participants of any we’ve offered to the Blood Brothers,” says physical therapist Donna Oldfield, PT, at the Gulf States Hemophilia and Thrombophilia Treatment Center (GSHTC) in Houston, where the classes were first created. She was one of the presenters of an hour-long muscle chisel session at NHF’s 65th Annual Meeting in Anaheim, California, in October 2013.

Sabrina Farina, LMSW, GSHTC site coordinator for the Lone Star Chapter’s Blood Brotherhood Program, first conceived of muscle chisel while working out at her own gym. She started pondering the possibility of offering something comparable for patients with bleeding disorders at the HTC. Farina and Oldfield invited James Loomis, a certified trainer at the University of Texas Health Recreation Center in Houston, to help design a program.

“James took bits and pieces of the various classes he teaches and modified them so that the cardio and weight training were lower impact,” says Oldfield. “He gave us a more gentle approach.”

The classes avoid exercises like deep squats, lunges and jumps, which are especially difficult for people with knee and other joint problems. They do include lots of equipment, though. The men work out with dumbbells, elastic resistance bands, barbells and Pilates balls in a variety of weights. Loomis leads the men through each exercise during the 60-minute class. Oldfield walks around, helping anyone who has difficulty with a particular move. For participants in wheelchairs, for example, she shows them how to work their arm muscles.

Male bondingBecause of their bleeding disorders, many men in the class have never participated in sports or fitness activities traditionally geared toward men. The slower, modified exercises in the muscle chisel class give them that opportunity.

Muscle MattersClasses safely sculpt men’s bodies

“For guys who haven’t exercised in a long time, it’s a great first step to taking up physical activity,” says Haarde.

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