GATEWAY CONNECTION · third of the way towards its goal of enrolling 2,000 confirmed carriers in the MLOF Research Repository by the end of 2017. ontact your local HT to learn how

WINTER 2017

GATEWAY

CONNECTION

CALENDAR OF UPCOMING EVENTS

July 21-23 FEW @ the Double Tree Chesterfield, MO

August 17 Wine Tasting Fundraiser Farotto’s Italian Restaurant and Pizzaria–Rock Hill, MO 24-26 NHF’s 69th Annual Meeting Chicago, IL

September 25 Tee Off for Hemophilia The Legends-Eureka, MO

October 1 Membership Meeting and Cardinals Baseball game

November 4 Trivia Night The Pavilion at Lemay

December 17 GHA Holiday Party Magic House Like us on

WWW.GATEWAYHEMOPHILA.ORG

Join us for GHA’s annual meeting, where members come together for educational sessions on the treatment of bleeding disorders and have the opportunity to meet and network with other people who have the same disorder. The weekend will begin with a Friday evening reception with exhibitors, members, and GHA’s Board of Directors recognizing some of GHA’s wonderful donors. You will have multiple sessions to choose from, including a teen tract, young adults, newly diagnosed families, aging well with a bleeding disorder, vWD, parents, men, women, and grandparent sessions. You may find the full agenda and registration at www.gatewayhemophilia.org. This year an advocacy pre-con will be held for our advocacy ambassadors. If you are interested in becoming more involved in advocacy, please email Bridget at [email protected] for more information.

GHA’s Family Education Weekend

is coming soon! When: July 21-23 Where: The DoubleTree Chesterfield Hotel 16625 Swingley Ridge Rd Chesterfield, MO 63017

REGISTRATION DEADLINE IS JULY 1!

Gateway Connection

is published by

Gateway Hemophilia Association

4976 Eichelberger St. St. Louis, MO 63109

314-482-5973 gatewayhemophilia.org

Email us at [email protected]

BOARD OF DIRECTORS

President Dave Decker

Vice President Anne Parrott

Treasurer Andrea Metcalf

Secretary Stephanie Bauman

John Carney

Liz LaFlamme Brent Miller

Kari Moellenhoff Scott Putnam

Chris Schneider Darlene Shelton

Steven Staats

INDUSTRY ADVISORY CHAIRS

John Carleton Jessica Hurtig

EXECUTIVE DIRECTOR

Bridget Tyrey

COMMUNICATIONS AND PROGRAM MANAGER

Jennifer McNamee

2 GATEWAY CONNECTIONS SPRING 2017

GHA celebrates World Hemophilia Day at the

St. Louis Science Center!

On April 17, 2017, the Gateway Hemophilia Association joined with community members and their families at the St. Louis Science Center to celebrate World Hemophilia Day. Guests of the event were treated to dinner and a presentation by Bioverativ, followed by a fun science lab activity enjoyed by kids and adults alike. As the sun began to set, the group of more than 30 walked across the bridge from the Science Center to the James S. McDonnell Planetarium to watch it slowly change from white to bright red. The Planetarium was only 1 of more than 40 landmarks across the world lit up red in celebration of World Hemophilia Day.

In Honor of World Hemophilia Day, Enroll in MLOF! This year’s World Hemophilia Day theme, “Hear Their Voices” encourages us to come together to show our support for the millions of women and girls affected by bleeding disorders. One such program that has listened to the needs of the hemophilia community is My Life, Our Future (MLOF). MLOF offers free genetic testing, or genotyping, to potential and confirmed carriers. Genotyping enables females to better manage their own health and may aid in family planning decisions. Participating women and girls also have the option to contribute to the central MLOF Research Repository, further strengthening this invaluable collection of data and samples to improve understanding of hemophilia.

If you haven’t already participated, the time is now! MLOF is nearly one-third of the way towards its goal of enrolling 2,000 confirmed carriers in the MLOF Research Repository by the end of 2017. Contact your local HTC to learn how you and your family can get involved. With every yes, progress! My Life, Our Future is a partnership of the American Thrombosis and He-mostasis Network, Bloodworks Northwest, the National Hemophilia Foun-dation, and Bioverativ (formerly Biogen). Visit MyLifeOurFuture.org for more information.

SPRING 2017 GATEWAY CONNECTIONS 3

http://www.mylifeourfuture.org/


The 2017 Hemophilia Walk took place on May 5th at a new location across from The World’s Fair Pavilion at Forest Park. Those that participated enjoyed sunshine and 70 degree weather, as well as the company of more than 300 other participants. In addition to being the Gateway Hemophilia Association’s biggest fundraiser, this feel-good, family friendly event, raises awareness and invites the community in to support those living with bleeding disorders. Walkers and runners celebrated with breakfast and great music before and after the main 1 mile walk and 5k run events. Leading the runners, Alexander Welch won the 5k race with a time of 22:12!

Team Action Jackson was this year’s top team. Led by Captain Kristina Klein, they raised an impressive $3,625! An additional four teams each raised more than $2,000— Luke’s League, Team G-Rex, The A Team, Blood and Thunder and HemophiLiam.

The top individual top fundraiser was Danielle Flores, reaching $1,830! The following individuals joined

Danielle as “Factor Club Members” with individual

fundraising of at least $250: Stephanie Bauman, Bob Eschbacher, Anthony Flores, Bailey Hilmes, Jackson Klein, Betty Jane Klein, Liz Laflamme, Elaine Majerus, Anne Parrott, Makenzie Sledd, Trudy Stringer, and

Bridget Tyrey.

GHA’s Hemophilia Walk/5K 2017 - By Stephanie Bauman, GHA Board Member

“My favorite moment from the walk was

being surrounded by the positive energy

exuded from our team members, other

teams, walkers, runners, exhibiters, staff members, and volunteers. We could feel the love.” –Team Captain, Kristina Klein

“Make the ask. Everyone gives, let’s just make sure we are part of who they give to!! You will be SO surprised who gives, when you just ASK!!” --2017 Top Individual Fundraiser Danielle Flores

Both national and local sponsors contributed to the success of this year’s walk. Notably, the national presenting sponsor was Shire and Pacesetter Plus Sponsor was Novo Nordisk. Official sponsors included: Bioverativ, Bayer, CVS Specialty, Grifols, Hema Biologics, Octapharma, Pfizer, and Accredo Specialty Pharmacy. Local Sponsors included: CSL Behring and Heritage Biologics (Gold), ARJ Infusion Services, Aptevo Therapeutics, CVS Specialty, Novo Nordisk, Option Care, and BriovaRx Infusion (Silver), Bioethics Advantage, Bioverativ, JB Marine Services, Inc., Kohl's, Shire, and Larson Exteriors of Missouri (Bronze), Accurate Rx, Affordable Auto Credit, Athletico Physical Therapy, Cotrill's Pharmacy, Inc., Farotto's Pasta & Pizzaria, Glendale Chrysler Jeep Dodge Ram, NCHS, Superior Biologics, and UMB Bank (Kilometer).

Bridget Tyrey, Executive Director, extends her sincere thanks to all those that participated, donated and fundraised on behalf of GHA. In total the 2017 St. Louis walk raised $44,144, short of the $50,000 goal. This money is used to fund the GHA men’s, women’s and teen groups, Camp Notaclotamongus, lobbying and ad-vocacy efforts, the youth golf league, scholarships, dental assistance, medic alert and helping hands. FEW will have a booth for those interested in pro fundrais-ing tips and doing their part to support GHA.

If you have not yet had a chance to donate, the walk site remains open at:

www.GatewayHemophilia.org

Pro Fundraising tip: “Share your

story. The more we shared why we walked, how GHA has helped us and will help us in the future, the more people were more willing to donate. Supporters know their donations not only supported research, but also

local programs that would directly

benefit our family.” –2017 Top Fundraising Team

Captain, Kristina Klein

(Pictured left: Team Action Jackson)

“I am glad that the construction made us change spots, as we have found a much better spot than before! Also, it is great to see the teens taking part and running their own fundraisers.” –Top Fundraiser, Danielle Flores (Pictured below, with Jessica Hurtig)

(Top three 5K run finishers pictured above; winner Alex-ander Welch picture center)



_ GATEWAY CONNECTIONS SPRING 2017 SPRING 2017 GATEWAY CONNECTIONS 7

BloodCenter of Wisconsin Announces New Test for vWD

The BloodCenter of Wisconsin (BCW) recently

announced the launch of a new and more sensitive test

for von Willebrand disease (vWD), a genetic disorder

characterized by either a qualitative or quantitative flaw

in von Willebrand factor (vWF). Milwaukee-based BCW

is a not-for-profit organization that specializes in blood

services, organ, tissue and marrow donation, diagnostic

testing, medical services and research.

Depending on the specific type, individuals with vWD

can experience bleeding-related symptoms that range

from mild to severe. Despite being the most common

bleeding disorder, vWD is historically a more challenging

condition to screen for, often necessitating a battery of

tests to pinpoint a diagnosis.

The “vWF GPIbM Activity” test is designed to uncover


qualitative vWF defects to reduce variability and provide

“more precise, reliable and sensitive test results,”

according to a BCW press release. The availability of the

test could be a boon to clinicians, particularly

hematologists encountering potential cases of vWD.

“As a physician caring for individuals with inherited

bleeding disorders, this development is an exciting

advancement in von Willebrand disease diagnostics,”

said Jonathan Roberts, MD, Associate Medical Director,

Bleeding & Clotting Disorders Institute, Peoria, IL. “This

assay will reduce some of the diagnostic challenges in

caring for individuals with von Willebrand disease.”

Source: BloodCenter of Wisconsin press release dated

April 4, 2017

Donations can still be made to GHA’s

Hemophilia Walk 2017 by visiting

www.GatewayHemophilia.org

Help us reach our goal with

your tax-deductible

donation!




PT, physical terrorist, pain and torture... We go by many names, but what exactly is a physical therapist? Why does your hematologist insist that you talk to one every time you show up for a comp visit?

Despite our bad reputation, we actually serve a very useful purpose. As physical therapists, we are trained extensively in the evaluation of how your body moves and the art of exercise. As a person living with a bleeding disorder, your body may not always move in the way that you want it to move. The way you participate in exercise may be different from your neighbor. This is where we come in. Not only can we evaluate how your joints are moving (or not moving), we can often help you understand why and give you the tools to best take care of yourself. A knee that is stiff from arthritis may sometimes feel like a knee bleed, but how you act in response to the different causes of pain or dysfunction is very different. Again, this is where we come in. Your PT can help you determine what is

Partnering with Your Physical Therapist for Better Health by Makenzie Sledd, PT

happening inside your joint and provide you with the tools that you need improve your pain, increase your mobility, and most importantly, give you the ability to do the things that you want to do.

The most important benefit a PT provides in your comp clinic is preventative medicine. This is where the magic truly happens. By examining your joints at every visit, we are able to catch issues before they lead to bigger problems. A tight hamstring may seem like a pretty benign issue, but it can cause enough stress on your knee over time to lead to a knee bleed during a simple daily task. Some simple hamstring stretching done on a regular basis is a simple tool you can use to take care of yourself, and your PT is more than happy to teach you the safest way to stretch.

Bottom line: take full advantage of every visit with your PT. Ask questions, troubleshoot problems, and soak up whatever advice they give you. Physical therapists exist because people want to help their patients move better. Let us help you help yourself. And get moving!




Fairy tale dreams came true

At our biggest camp to date with 27 campers and 12 LITs, magic was in the air as campers arrived at this year’s fairytale themed Camp Notaclotamongus. As they walked up the lollypop stairs for check-in, each camper was greeted by a host of characters, including Snow White and her 7 dwarves, Tweedle-Dee and Tweedle-Dum, and the Queen of Hearts. Then they were led into the Gingerbread House to complete their check-in, before learning if they would be staying in the Wolves’ Den, the Pigs’ straw, stick, or brick house, or Red Riding Hood’s cottage.

That evening, the campers were split up into 4 teams to embark on a scavenger hunt to find the Gingerbread Man. They searched the camp for things such as Rapunzel’s tower, the cow that jumped over the moon, and the Frog Prince’s Pond.

The next day boats were built from cardboard and duck tape for the “Rub-a-dub-dub, 3 campers in a tub” chal-lenge where they tried to cross the pool in their boats.

Friday was infusion day, where 3 of our campers self-infused for the first time! Congratulations to Trenton, Jay, and Liam for earning your “Big Sticks”! That evening the campers were treated to a Mad Hatter tea party with Alice, the Mad Hatter, and the White Rabbit!

When Saturday came around, it was time to turn the last page in our wonderful fairy tale. Parents came pouring into the Gingerbread House to give hugs and hear stories about all the adventures their children had, the dragons they slayed, and the friends they made.

The End

“Laughter is timeless, imagination has no age, and dreams are forever.” -Walt Disney

A big thank you to all of our

“Fairy Godparents” who granted us the

donations that made camp possible!

Monetary Donors CVS/Specialty Shire Pfizer

ARJ Infusion Services

CSL Behring Bioverativ Novo Nordisk

Accredo Grifols Accurate Rx NCHS

Product Donors Bayer Novo Nordisk ARJ Infusion Services

All Care Plus Pharmacy Inc NCHS

CVS/Specialty Cardinal Glennon HTC

Superior Biologics Accredo

BriovaRx Infusion Services Accurate Rx

Bio Ethics Advantage Soleo Health Grifols


Thank you to all of our incredible volunteers who made camp a wonderland!

The Wolves’ Den - T-Bone McMullen, Todd Daube

The Straw House - Kevin Ellebrecht, Austin Hanse, Will Pieper

The Stick House - Joe Zwier, Steve Kreher, Tom Joseph

The Brick House - Craig MacDonald, Josh Swanson

The Little Red Riding Hoods - Kirstie Hilty, Maura Madinger, Ariel-le Pflumm

The Enchanted Med Shed - Dr. John Puetz, Lydia Johnson, Kathy Logan, April Litrell, Cate Toman, Lynn Golec, Angie Kaminski, Anne Mahoney, Sue Pardeshi, Angela Potter, Becky Toman, Dr. David Wilson.

Extra magical helpers - Angela Brown, Jen McNamee, Kevin

Harris, L.A. Aguayo, Jessica Hurtig, Maria Huesman, Maria Mohler, Danielle Flores, Tony Flores, Brian Rodgers, Jim Hurster, Jake

Bauman, Mike Sledd, John Huff, Carl Weixler.

From the bottom of our hearts, we thank each family

who shared their most precious possession with us and

each staff member who gave up time away from their

own family to be with our Camp Notaclotamongus

Family… Bibbity Bobbity Boo!!!!

Bridget Tyrey & Makenzie Sledd

Camp Directors


__ GATEWAY CONNECTIONS SPRING 2017 SPRING 2017 GATEWAY CONNECTIONS 17

DONATIONS, HONORARIUMS, AND MEMORIALS GHA gratefully acknowledges our donors who so generously contributed to the Chapter in the first quarter of 2017 with

general donations, Honorariums, and Memorials.

$7,000 - $9,999

ARJ Infusion Services

CVS/Caremark

$4,000 - $6,999

Carneys Kids Foundation

The Hemophilia Alliance

Foundation

Heritage Biologics

$1,000 - $3,999

Bayer, Inc.

Bioverativ

CSL Behring

National Hemophilia

Foundation

NCHS

Novo Nordisk

Pharmaceuticals Inc.

Pfizer

$500 - $999

Shire

Superior Biologics, Inc.

$100 - $499

AccurateRX

Bauman, Stephanie

Brockmeyer, Steve

Burns, Emily

Catholic Health Association

Comprehensive Health

Education Services

Decker, Dave

Decker, Liam

Degenhardt, Ashley

Edler, Tracey

Farotto’s Pasta & Pizzaria

Flores, Danielle

Gindling, Judy

Glendale Chrysler Jeep

Dodge

Ram

Hilmes, Stacy

Hoffman, Dr. & Mrs. Daniel

Johannes, Stephen

Johannes, Charla

Klasing, Linda

Majerus, Dr. Elaine

Marema, Kristin

Millhauser, Carl

Moellenhoff, Kari

Parrott, Anne

Powers, Tim

Putnam, Scott

Scanlon, Joe

Schneider, Abby

Schneider, Abby & Chris

Shrout, Jeff

Sims, Janet

Staats, Steven

Stringer, Trudy

Superior Biologics, Inc.

Thompson, Scott

Thrivent

Turnbaugh, Wanda

UMB Bank

Vino for a Cause

Wilson, Dr. David

Wood, Bonnie

$50 - $99

Ayres, Tami

Barton, Allison

Baughman, Vanessa

Becker, Matthew

Brown, Rob

Costephens, Julie

Degenhart, Daveann

Deiters, Amy

Desloge, Christine

Frese, Rod

Garea, Diane

Gornicz, Jenna

Greenwood, Roberta

Hoffman, Ashley

Josephus, Chrystal

Klein, Kristina

Kraenzle, Cherri

Lanham, Sarah

Metcalf, Andrea

Nightingale, Jack

Powers, Tom

Rackas, John

Radek, Stephanie

Sargent, Mike

Schmit, Robyn

Schwartz, Lindsay

Sledd, John

Sledd, Makenzie

Snyder, Laura

St. Agatha Catholic School

Thrower, Marykay

Tyrey, Bridget

Zinschlag, Edward

$1 - $49

Addie, Kate

Amazon Smile

Bauman, Jane

Brockmeyer, Carol

Brown, Leslie

Crews, Jessica

Crowder, Allan

Davies, Judy

Drenckpohl, Derrek & Molly

Dusik, John

Failoni, Vic

Fletcher, Missy

Griser, Mary

Gritke, Leslie

Hamrock, Gerald

Hanse, Austin

Hartung, Monica

Hickman, Leighann

Hilmes, Bailey

Huff, Laura

Jones, Laura

Kalisiak, Brooke

Kinion, Rachel

Klein, Ali

Kohlman, Anne & Don

LaFlamme, Elizabeth

Laughlin, Charlene

Laughlin, Patrick

Leith, Brian

Littrell, April

Lodewyck, Mary

Mantia, Cathy

Mayer, Lindsey

McNamee, Jennifer

Mitchell, Vicky

Newland, Leann

Potts, Amanda

Powers, Jan

Powers, Dan

Powers, Stephanie

Powers, Jennifer

Sansegraw, Kim

Schermaul, Danielle

Shippey, Dean

Tritschler, Martha

Tyrey, Doogan

Vontill, Natalie

Whitney, Robert

Wilmarth, Jill

Wofford, Tiffany



NHF’s 69th Annual Meeting will be held August 24, 2017 – August 26, 2017 in Chicago, Illinois at the beautiful Hyatt Regency Chicago.

GHA travel scholarships available at www.GatewayHemophilia.org—July 1 deadline

Join us for three days full of educational sessions, networking opportunities, and access to our exhibit hall. All registrations include entrance to our Opening Session, Awards Luncheon, and our

4976 Eichelberger Street St. Louis, Missouri 63109 314.482.5973 www.gatewayhemophilia.org

Presort Standard US Postage

PAID St. Louis, MO

Permit No. 221

Email us at: [email protected]

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GATEWAY CONNECTION · third of the way towards its goal of enrolling 2,000 confirmed carriers in the MLOF Research Repository by the end of 2017. ontact your local HT to learn how