Factor Friends • Volume 1• 2016 (English)

Volume 1 • 2016

The Lone Star Chapter of the National Hemophilia Foundation

In This Issue: • Note from the CHAPTER • 2016 Board of Directors • Texas Advocacy Coalition Update • Project Calls • Community Spotlights • Women with Bleeding Disorders • Education Events and Success • 2015 WALK - UPDATE • inhibitor insights by Novo Nordisk Lone Star Chapter of the National Hemophilia Foundation 5600 Northwest Central Rd. Suite 140 Houston, TX 77092 Phone: 713-686-6100 Fax: 832-383-4601 www.lonestarhemophilia.org Lone Star Staff: Melissa Compton Executive Director Heidi Hensley Director of Community Relations Kelly OʼHara Special Events Coordinator The Lone Star Chapter of NHF serves the bleeding disorders community of South Texas. Our vision is very simple. We exist to ensure that every South Texan living with a bleeding disorder has what he/she needs to manage his/her medical condition successfully. This includes education/support groups, scholarships, financial assistance, and advocacy initiatives.

Happy New Year!!!

By the time you are reading this, we will be full swing into 2016! We hope you enjoyed your holidays with friends and family, and find some time to relax and recharge. It’s so important to our community, with the demands a bleeding disorder puts on the patient and their family, that we take time to take care of ourselves. In this culture of “busy-ness” that we live in, it’s easy to get caught up in all we have to do, and forget that we can’t do it if we don’t take care of ourselves.

So….what will you do in 2016 to take care of yourself? Maybe you’ll take 15 minutes a day to just listen to music, close your eyes, and rest. Maybe you’ll start an exercise or yoga class (consult with your doctor first!) Maybe you’ll join a book club, or start a new hobby. Someone told me before the holidays “That’s great, I’d love to do something for myself this year, but there’s no way I can add anything else to my schedule.” After talking for a few minutes, we decided that taking care of ourselves might mean giving something up or saying no to something that is taking up too much of our time and energy, and not getting the results we want. For me, it’s technology.

Do I really need to know every night what all my friends did today (checking facebook)?

Do I really need to check my email at 8:00 at night? Maybe that time would be used more wisely relaxing and doing something that refreshes me.

Whatever you resolve to do to take better care of yourself in 2016, resolve to get involved in the Lone Star Chapter community. We have so many opportunities for you to be a part of, and we can’t wait to have you join us. Keep reading and mark your calendars for Family Education Days, Texas Bleeding Disorders Conference, Womens/Adult Men/Teen programs, and more!

2016 Board of Directors The Lone Star Chapter held its annual Board Elections at our Winter Events in December. Thanks to all of you for participating. The Lone Star Chapter would like to thank Nick Zasowski, outgoing President, for his four years of service as President of the Chapter. Nick volunteered his time to the chapter over the last four years, and we appreciate all he did! We would also like to welcome Celia Patino to the Board of Directors in her first term as Trustee. Celia and her family are very active with the Lone Star Chapter and we are excited to have her on the Board!

The Lone Star Chapter would like to introduce our 2016 Board of Directors: Dan Bond • President Allison Pohl • 1st Vice President James Setliff • Treasurer Amanda Wolgamott • Secretary

Barry Haarde • Trustee Aaron Gonzales • Trustee Celia Patino • Trustee

Lone Star Chapter Board of Directors 2016 President Dan Bond 1st Vice President Allison Pohl Treasurer James Setliff Secretary Amanda Wolgamott Trustee Aaron Gonzales Barry Haarde Celia Patino Special Events Coordinator Kelly O始Hara HTC Representative Donna Oldfield Gulf States Hemophilia Treatment Center TCH Representative Aleida Stark Texas Children始s Hematology Clinic XXXXXXXX About This Publication:

Factor Friends is the quarterly newsletter published free of charge to the members of the Lone Star Chapter bleeding disorders community. The Lone Star Chapter does not endorse the products or services of its sponsors or advertisers.

Any communication presented in this newsletter is strictly for informational purposes. The recipients are advised to consult with their physician before using any information in this newsletter.

The Lone Star Chapter of the National Hemophilia Foundation

Texas Advocacy Coalition Update

2015 was a very exciting year for the Coalition! As you know, we passed the Hemophilia Assistance Program bill, changing the use of funds to cover more than just factor!

Now, eligible patients may use those funds to pay for their insurance premiums, allowing more families to be able to afford the rising costs of insurance. We are working this year to be sure these changes are implemented in a way that will benefit the community the most. As always, we are staying up to date with Access to Care issues affecting our community. In 2016, the Coalition committee members will be meeting to begin setting our agenda for the 2017 legislative year.

How can you get involved? You can advocate for yourself every day! Tell your story to someone who has no idea what an infusion is. Explain what a bleeding disorder is and how it affects your life.

Make sure you join us at our Texas Bleeding Disorders Conference, where we will have various sessions available to you to learn how to tell your story, what it means to advocate, and more on how you can get involved.

Brendan Hayes, past Executive Director of the Texas Central Hemophilia Association, has moved on to work at the National Hemophilia Foundation in their Advocacy Group.

The Coalition would like to thank Brendan for her tireless efforts to get this Coalition off the ground and running. Brendan is still involved in the Coalition, as the NHF representative. Melissa Compton, Lone Star ED and Coalition Coordinator, and Traci Mayer, Texas Central Hemophilia Association ED, are excited to keep working for the families in Texas!

The Lone Star Chapter of the National Hemophilia Foundation

COMMUNITY SPOTLIGHT

Community Spotlight

Chapter President Dan Bond presenting a poster at the American Society of Hematologists (ASH) this December. He co-authored the project with Gulf States Treatment Center Medical Director Dr. Miguel Escobar. The poster explains the half life modeling system used in the iBleed logging app research study sponsored

by Pfizer Hemophilia in 2012. Dan is believed to be the first non-medical person to present at ASH. The iBleed app uses this half life model to estimate the current factor level from the infusion log. iBleed Version 2 is currently under development.

Matthew Thomas Memorial Scholarship Applications Available!

Five $1000 scholarships will be awarded to deserving students pursuing post-high school education.

Applications are available on our website or by contacting the Lone Star Chapter or your HTC. Applications are due by June 27, 2016. Don't miss this opportunity!

Lone Star Chapter Womenʼs and Girlʼs Program Kicking off 2016 by EATING HEALTHY

Thanks to Emergent BioSolutions, our women and girls enjoyed an evening at Central Market Cooking School on February 4th. They learned that eating healthy doesn’t have to be difficult. You can make a difference by just making a few simple changes. The cooking demonstration and activity was a fun way to practice what we learned!

Camp Ailihpomeh Wants You! (Hemophilia spelled backwards)

SAVE THE DATE! July 9th through July 15, 2016 Located in Meridian, Texas

Men wishing to work with youth and become a positive male role model are welcome to apply!

(Must be 18 years or older)

Service hours (150 total) and a letter of recommendation offered for those who require it after a positive completion of the camp week

Please visit our website for additional camp information:

http://www.camp-ailihpomeh.org

Please contact Camp Ailihpomeh Director, Ali Hankins, for an application or questions at 682-885-1311 or Ali.Hankins@cookchildrens.org

The Lone Star Chapter of the National Hemophilia Foundation

The Lone Star Chapter of the National Hemophilia Foundation

Education Family Education Days

This year, the Lone Star Chapter will be hosting Family Education Days in several areas. These education days will provide families to connect with other families in their area, visit exhibit booths of our industry partners, and hear educational sessions relevant to their bleeding disorder. Kids will also have special programming at each event. We are excited to announce the following Education Days in 2016:

Houston • April 23rd

Hilton Garden Inn SugarLand, followed by complimentary tickets to a local attraction

Valley • August 6th

Location to be announced in South Padre, followed by complimentary tickets to a local attraction

Austin/San Antonio • August 20th

Courtyard Marriott New Braunfels River Village, followed by complimentary tickets to a local attraction

Make plans to join us for a fun-filled day!

SAVE THE DATE

June 24-26, 2016 JW Marriott 2016 Texas Bleeding Houston, TX

Disorders Conference

Make plans to join us for education, interactive exhibit hall, and fun for the whole family at our Final Night Event.

New education and social opportunities!

Tips and Tricks for Smoother Infusions Are you a Caregiver struggling with Infusion Time?

HFA’s website and www.hemophiliafed.org is full of resources for you and your family. One resource is the following Tips for Smoother Infusions. Visit HFA’s website and click on Resource Library at the top for tons of information and resources in many different areas!

The Lone Star Chapter of the National Hemophilia Foundation

2015 WALK UPDATE

We had an exciting Walk season in 2015! The Lone Star Chapter hosted over 1100 walkers in Houston and Austin. Unfortunately, Hurricane Patricia had other plans for the Valley, and we were unable to host our Walk there this year! We raised over $120,000, all money that will go directly into the Lone Star Chapter community! Many thanks to all our Team Captains and walkers who brought awareness to the bleeding disorders community and raised these critical funds!

We were very excited that Kelley O’Hara, our new Special Events Coordinator, came on board just before the Houston Walk at the Houston Zoo! Kelley jumped right in and went to work, and we are so excited to have her on our staff for 2016!

Thank you also goes out to our Walk Chairs: Austin – Shelley Clawson Houston – Debbie de la Riva Valley – Rose and Roman Gomez Thank you for all your hard work in getting our teams excited about their local Walks!

2015 WALK UPDATE - Continued The Lone Star Chapter would like to thank each of our teams that walked in this year’s Walks (this list includes teams that registered online. If you walked in one of our Walks, and are not listed here, thank you!!!!):

We would also like to thank those Businesses, Individuals, and Foundations who generously stepped up as National and Local Sponsors:

inhibitor insights

sponsored by Novo Nordisk Inc.

The Lone Star Chapter of the National Hemophilia Foundation

Help is Here! Resources for People with Inhibitors

by Laurie Kelley

In 2005, when I first sat with families with inhibitors and listened—really listened—to their challenges, I was blown away. First, by how much they struggle: standard factor doesn’t work to clot the blood, different treatment protocols sometimes fail, children are on prescription painkillers, with ports and surgeries. Second, by how separated they were from the rest of the community, shunned almost. “No one understands our challenges,” one mother told me, “and when we share, they back away.” Hemophilia with inhibitors was almost like a separate disorder. Third, I was amazed by how stoic and strong these families are! And even more amazed by the lack of resources for them.

I’m happy to say so much has changed since 2005. We now have inhibitor summits, financial aid programs, books, and even a camp! All for families with inhibitors. At long last, our hemophilia community has embraced the inhibitor families, and we’ve united.

When I learned about the struggles of inhibitor families, I vowed to write a comprehensive guide to dealing with and living with inhibitors—and I did! From the interviews for Managing Your Child’s Inhibitor emerged the need for a summer camp. A colleague took that idea and eventually did just that. What will knowing the needs of the inhibitor community lead you to do?

Begin by ordering these free resources and enrolling in the patient assistance programs. Having inhibitors is tough enough, but knowing there are colleagues and professionals waiting to help you will ease the path forward. I hope our paths cross at a hemophilia or inhibitor event. I look forward to knowing your story.

Managing Your Child’s Inhibitor Laureen A. Kelley and Paul Clement (2009)

BOOKS

Written by parents of children with hemophilia, this comprehensive resource is the first and only book about inhibitors in the world. From the parents’ and patients’ point of view, it extensively covers topics such as pain management, surgery, family life, products, and treatment regimens.

Published by LA Kelley Communications, Inc. with funding by an unrestricted grant from Novo Nordisk.

To order: www.kelleycom.com

Inhibitor Education Summits

The Great Inhibinator!

Chris Perretti Barnes (2006) This richly illustrated storybook introduces a preschool boy with hemophilia and an inhibitor. He manages his feelings by becoming a Halloween superhero called the Great Inhibinator. Written by the mother of a child with hemophilia and inhibitors. For ages 4–7. Sponsored by Bayer HealthCare and BioRX. To order: www.biorx.net

PATIENT PROGRAMS

Inhibitor Family Camp

The only national educational forums for inhibitor patients to meet and learn about their rare complication. Offers lectures from experts in the field and interactive forums with parents and patients. National Hemophilia Foundation (NHF) provides these summits only for people living with inhibitors, covering most travel expenses for participants.

Funded through a grant from Novo Nordisk Inc. and Baxalta Incorporated.

For info: www.hemophilia.org

Camp addresses the unique needs of children with active inhibitors, and their families. The full weekend of education, support, and fun is held twice yearly, with camper costs covered.

Funding provided by Novo Nordisk Inc. Camp is designed and operated by Comprehensive Health Education Services.

For info: www.comphealthed.com

FINANCIAL & PRODUCT ASSISTANCE

NovoSecure™ Novo Nordisk’s NovoSecure is a comprehensive patient support program for patients with hemophilia A, hemophilia A or B with inhibitors, factor VII deficiency, acquired hemophilia, Glanzmann’s thrombasthenia, or factor XIII deficiency, regardless of product choice. Replacing SevenSECURE®, NovoSecure allows enrollees to apply for a variety of programs, including • Competitive scholarship program • Life coaching with HeroPath™ • Career counseling • Insurance support Novo Nordisk also offers product and copay assistance programs to eligible patients who have been prescribed Novo Nordisk products.

For info: www.mynovosecure.com 1-844-NOVOSEC (1-844-668-6732)

NAVA Baxalta’s NAVA offers highly personalized information and tools to provide education and support specific to each patient’s needs: NAVA also includes CARE (Coverage, Assistance, Resources, and Education) to help patients take control of their healthcare needs through insurance and product assistance.

Copay or coinsurance support may be availableto reduce out-of-pocket costs associated with a Baxalta product.

For info: nava.baxalta.com Baxalta Resource Helpline 888-229-8379 To enroll in CARE: 855-322-NAVA (855-322-6282)

Article reprinted with permission by LA Kelley Communications, Inc. • www.kelleycom.com

The Lone Star Chapter of the National Hemophilia Foundation