Letter from the President of the Board

Happy spring! Many of you may know me as the father of two sons with hemophilia or as a member of the EPC Board of Directors for the last several year

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Story Transcript

Happy spring! Many of you may know me as the father of two sons with hemophilia or as a member of the EPC Board of Directors for the last several years. It has been a rewarding experience getting to know so many of you and working with the Chapter to support our community. As my family grows, so does my appreciation for this great organization and my dedication to our mission. Now I will move into the role of Board President, which is an honor as well as a joy. Our Chapter benefited from strong, caring leaders for many years and I am grateful for the opportunity to follow their examples and continue supporting and partnering with people from all over our community. It also is exciting to work more closely with Curt Krouse, his team, and the rest of the Board to help guide the Chapter into the future. My career in biomedical research has allowed me to learn about a variety of diseases and contribute to finding successful treatments and ways to assist affected patients and their families. From my professional and personal experiences I learned what many of you also know; our community faces unique, shifting, and often daunting challenges. Fortunately we are resilient, positive and persistent. We are willing to meet these challenges head-on. Our advocacy and education efforts, along with our commitment to supporting research, are critical aspects of our mission and our Board will work to ensure these continue. Of course, we will also keep the needs of our patients and families at the heart of what we do. The changes initiated by Curt and the rest of the EPC team over the last year, as well as what is planned for the rest of 2015 will help us continue to grow, partner with, and better serve all of you. I am excited to see all of this happen and hope you are too. I also look forward to meeting many more of you in the future. Sincerely, Leonard M. Azzarano President of the Board



May 9 Million Dollar Bike Ride – Philadelphia



May 17 Adventures in Education – hershey



June 6 Please Touch Museum – Philadelphia



June 14 Steamtown Train Ride - Scranton



June 19 State College Spikes Baseball Game – State College



June 20 Barbeque Cook-Off for a Cure – Hatfield



July 19-24 Double H Camp – Lake Luzerne, NY

August 15-16 Perk Up hemophilia Half Marathon – Pennsburg

Get details on all our events on our website: www.hemophiliasupport.org

Spring 2015 Volume 22 #1

Upcoming Events

The Winning Spirit

Hello Everyone,

Eastern Pennsylvania Chapter of the National Hemophilia Foundation

Letter from the President of the Board

www.bbqcookoff4acure.com Saturday June 20, 2015 Hatfield American Legion

2100 Koffel Road, Hatfield, PA

BBQ Competition Live Band Horseshoe Competition All You Can EAT $20 mug for all you can Drink Kids Games EPC salutes our HTC Team

Staff

Leonard M. Azzarano, President Andrew Serrill, Treasurer Thomas DiCamillo, Assistant Treasurer Cheryl Littig, Secretary George Levy, HPPS President Patricia Felthaus Bernadette Fox Robert Sawyer Kathleen Sell Heather Vespe Anthony Ricco Noel A. Fleming, Esquire Legal Counsel

Curt Krouse, MS, Executive Director Janine Roberts, Development Manager Sarah R. Kluesner, Program Coordinator Lindsay Frei, Administrative Assistant

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Board of Directors

Eastern Pennsylvania Chapter of the National Hemophilia Foundation 14 E. Sixth Street, First Floor, Lansdale PA 19446 • 215-393-3611 • www.hemophiliasupport.org

The Winning Spirit is a publication of the National Hemophilia Foundation, Eastern Pennsylvania Chapter. The contents of this newsletter may be reproduced freely, but please attribute the source. The material in this newsletter is provided for your general information only. The Eastern Pennsylvania Chapter does not give medical advice or engage in the practice of medicine. EPC under no circumstances recommends particular treatments for specific individuals and in all cases recommends that you consult your physician or local Treatment Center before pursuing any course of treatment. Graphic Artist: www.chaley.com

Event Recaps: Bowling for Fun & Longwood Gardens See more photos at www.hemophiliasupport.org/photos.html Thunderbird Lanes in Philadelphia was sold out for the annual “Bowling for Fun” event on Saturday, February 28. Everyone had a great time enjoying pizza and bowling with family and friends. For those feeling lucky, tickets were sold for a chance to win one of over 30 raffle baskets, including a basket of Tastykakes and a Penn State football tailgate package. Thank you to everyone in attendance and to our corporate partners: Baxter, Bayer, Accredo, Soleo, CVS/Caremark, NCHS, Walgreens, Briova RX, Cotrill’s Pharmacy, and Penn Homecare. A special thank you to Board Members Pat Felthaus and Cheryl Littig for co-chairing this wonderful day.

EPC had a great time Celebrating Spring at Longwood Gardens on Saturday, March 21 with families from all over Eastern Pennsylvania. This event was part of our growing new family programs and was a huge success. We had perfect spring weather for the event, which included lunch and time to explore the gardens, including their Orchid Extravaganza display. Biogen Idec sponsored the day and led an activity for families to make their own DNA strands out of candy. Be sure to check the website and our Facebook page for announcements and new family programs. The Winning Spirit Spring 2015

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EPC County Captains – 41 Counties. 1 Chapter. We want everyone in EPC’s 41 counties to feel engaged and welcome to suggest new programming ideas to the Chapter. We’ve appointed more County Captains to champion our goal to grow a larger and more connected Hemophilia and von Willebrand community. Captains are available to you as a resource to meet other families and to develop new events in your area. We encourage you to reach out to your County Captain today!

Lorie Kerstetter [email protected] 717-271-6694 Counties: Lancaster, Berks

Frank Lentini [email protected] 717-838-2541 County: Lebanon

Jolene Scicchitano [email protected] 570-933-0377 Counties: Union, Snyder, Northumberland, Schuylkill, Montour, Columbia

Holly Coleman [email protected] 814-441-3810 Counties: Potter, Clinton, Centre, Huntingdon, Fulton, Tioga, Lycoming, Mifflin

Amanda Heisey [email protected] 717-341-1488 Counties: Dauphin, York, Adams, Franklin, Cumberland, Perry, Juniata

Linda Parry [email protected] 570-840-2395 Counties: Susquehanna, Wayne, Pike, Lackawanna, Monroe, Wyoming, Luzerne, Carbon, Sullivan, Bradford

Melissa Caulder [email protected] 484-508-8116 Counties: Chester, Delaware

Vickie DiCamillo [email protected] 215-341-1676 Counties: Montgomery, Bucks and Philadelphia

Lillian Diaz Bilingual (Spanish) Liaison 267-262-7221

Tina Marzigliano [email protected] 610-868-8196 Counties: Lehigh, Northampton

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Formas de sobrellevar el estrés familiar Cuándo superarlo solo y cuándo buscar ayuda profesional Por Leslie Quander Wooldridge | 25.02.2015 Nadie quiere tener estrés pero no hay forma de evitarlo. Y si a eso se le añade una enfermedad crónica como un trastorno hemorrágico, los síntomas pueden empeorar, afirmó Peg Geary, MA, MPH, trabajadora social e investigadora clínica sobre la hemofilia en el New England Hemophilia Center de UMass Memorial Medical Center en Worcester. Cuando no se controla, el estrés puede afectar los pensamientos, sentimientos, conducta y salud de la persona. Puede causar desde dolores de cabeza y fatiga, hasta ansiedad y aislamiento social, según la Mayo Clinic. El estrés también puede producir síntomas físicos y conductas inusuales en el adulto o niño afectado. Sin embargo, le agradará saber que las familias con problemas de hemofilia u otros trastornos hemorrágicos a menudo controlan el estrés mejor que otras, aseguró Geary. Los centros locales de tratamiento de la hemofilia tienen muchos recursos y personal experto preparado para ayudar. “Desarrollan una variedad de mecanismos para sobrellevar la enfermedad, como conseguir apoyo para la familia”, explicó Geary. Muchas familias llegan a tratar la hemofilia como algo normal y trasmiten una actitud positiva, agregó. “Si los padres pueden aceptar la hemofilia e incorporarla a su rutina, sirven de ejemplo para sus hijos”. Pero incluso si tiene la capacidad básica de sobrellevarla, puede aprender más. Lea los consejos de Geary. Esté atento a los niños. “Un poco de estrés es normal, como cuando su hijo está nervioso por una prueba al día siguiente o si está conociendo a gente nueva”, indicó Geary. El truco es reconocer cuándo el estrés normal pasa a ser un problema mayor. A veces los chicos se sienten abrumados o alterados, y no quieren hablar del tema. Quizá su hijo esté ansioso porque no puede participar en deportes con contacto físico y todos los demás sí”, dijo Geary. Señaló que en los niños, ser diferente es fuente de estrés. Pero si usted presta atención, puede detectar indicios sutiles. “Usted conoce a su hijo mejor que nadie y sabe cuándo algo no está bien”, dijo Geary. Si ve cambios en la conducta de su hijo, como más ira u otras señales de estrés, tome nota. Sugiera conversar pero no lo abrume. Si nota un problema, trate de interaccionar con sus hijos de manera que no se sientan amenazados, aconsejó Geary. Puede preguntarles delicadamente si algo los está molestando. “Pero no trate de forzar a su hijo a hablar”, recomendó. “Simplemente espere a ver si surge el tema en la conversación”. Si es así, puede comenzar el diálogo con ejemplos de cómo enfrentó usted una situación estresante de más joven, dijo Geary. Luego escuche a su hijo y ayúdelo a llegar a una solución. Proteja a sus hijos y ayúdelos a ayudarse a sí mismos. Es fácil caer en la tentación de consolar a los hijos tras cada problema, pero tal vez no sea lo mejor

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para el niño, advirtió Geary. “Es posible proteger a los chicos al punto que no desarrollan la capacidad de enfrentar situaciones”, dijo. “Luego, cuando se hacen adultos, no saben enfrentar el estrés y la presión”. O sea que déjelos estudiar para el examen y superar la ansiedad solos. Luego reconozca que sus sentimientos son válidos y confirme que cierto grado de estrés es normal, pero que pueden enfrentarlo. Así llegarán a ser adultos independientes. Mantenga un equilibrio. Cuesta ver que los chicos están ansiosos, pero no infle los problemas innecesariamente. Si lo hace, sus hijos harán lo mismo, y la idea no es que se pongan más nerviosos, dijo Geary. Si usted se está sintiendo estresado, trate de resolver el problema con sus propios recursos. Siempre puede decirle a su hijo adolescente, por ejemplo, que está preocupado sobre las infusiones que tendrá que ponerse cuando se vaya a acampar. Pero trate de analizar y enfrentar sus emociones antes de ayudar a sus hijos a hacer lo mismo con las propias. “Si los padres pueden tratar el estrés como algo normal y enfrentarlo, podemos esperar que los hijos sigan su ejemplo. Recuerde que es a usted a quien imitan”, dijo Geary. Pruebe nuevas soluciones. Quizá haya oído en las redes sociales sobre otras técnicas para superar el estrés, dijo Geary. Los diarios de estrés, que le permiten anotar sus sentimientos en un lugar seguro, pueden ayudar a algunas familias. La capacitación sobre atención plena (mindfulness), durante la cual usted se concentra totalmente en el presente, lo puede ayudar a aliviar el estrés. Las técnicas físicas, como la respiración profunda, meditación y yoga, también pueden ayudar. Y recuerde la importancia de ceñirse a una alimentación sana y dormir suficiente. Ya que todos responden de manera diferente, es posible que cierta técnica ayude a algunas personas más que a otras. O sea que pruebe más de una. Recurra a un profesional cuando lo necesite. A veces las pequeñas causas de estrés pasan a ser grandes problemas, incluso cuando trata de superarlas. Si el periodo de estrés pasa de durar unos cuantos días a varias semanas, tal vez necesite buscar ayuda. Hágalo también si usted o un ser querido está tan abrumado que le cuesta estudiar o trabajar. Y si algún familiar o usted está considerando hacerse daño, hable con un trabajador social, terapeuta u otro profesional de confianza, aconsejó Geary. “Si participa en un centro de tratamiento de hemofilia, debe recurrir a este primero”, recomendó Geary. Allí encontrará personal que lo conoce a usted y a su familia. Y un médico o trabajador social puede recomendarle recursos útiles rápidamente”.

Eastern Pennsylvania Chapter of the National Hemophilia Foundation 14 E. Sixth Street, First Floor, Lansdale PA 19446 • 215-393-3611 • www.hemophiliasupport.org

Coping with Family Stress When to power through or seek professional help By Leslie Quander Wooldridge | 02.02.2015 | Hemoware Stress. No one wants it, but everyone has it. And when you add a chronic illness like a bleeding disorder, that can exacerbate symptoms, says Peg Geary, MA, MPH, a clinical hemophilia social worker/ researcher at New England Hemophilia Center at UMass Memorial Medical Center in Worcester. When left unchecked, stress can affect a person’s thoughts, feelings, behavior and body. It can cause everything from headaches and fatigue to anxiety and social withdrawal, according to the Mayo Clinic. Stress also can result in physical symptoms and/or behaviors that are not usual for the adult or child involved. You’ll be glad to know, however, that families who deal with hemophilia or another bleeding disorder are often better at managing stress than others, says Geary. They have lots of resources and a ready staff at experts at their local hemophilia treatment center (HTC). “They develop a variety of coping mechanisms, like pulling in family support,” Geary explains. Many families normalize hemophilia and convey a positive attitude, she adds. “If parents can accept hemophilia, and make it part of their life routine, they set a good example for their kids.” But even if you have basic coping skills, you can learn more. Read on for Geary’s tips. Tune in to your children. “A little bit of stress is normal, like when your child is nervous about a test the next day, or if you’re meeting new people,” says Geary. The trick is to recognize when normal stress balloons into a bigger issue. Sometimes kids feel overwhelmed or upset, and won’t talk about it. Maybe your child is anxious because he or she can’t play contact sports and everyone else can, says Geary. She notes that being different is a big stressor for children. But you can pick up on subtle cues if you pay attention. “You know your child better than everyone else, and you know when something is wrong,” says Geary. If you see changes in your child’s behavior, like increased anger or other signs of stress, take note. Suggest a talk, but don’t go overboard. If you notice a problem, try to engage your kids in a nonthreatening way, advises Geary. You can gently ask if anything is bothering them. “But don’t try to force

your kid to talk,” she says. “Just see if the issue comes up in conversation.” If it does, you can lead the chat by giving examples of how you coped with a stressful situation when you were young, Geary says. Then listen and help your child develop a solution. Protect your kids and help them help themselves. It’s tempting to comfort your kids about every hiccup, but it may not be the best thing for your child, Geary warns. “You can protect kids so much that they don’t develop their own coping skills,” she says. Then when they enter adulthood, they don’t know how to deal with stress and pressure.” So let them study for that exam, and work through their anxiety partly on their own. Then validate their feelings and confirm that some stress is normal, but they can handle it. That’s how they will grow into independent adults. Maintain balance. It’s hard to see your kids feeling anxious, but don’t amplify issues unnecessarily. If you do, your kids will follow your lead—and you don’t want them more on edge, says Geary. If you’re feeling stressed, try to resolve the issue using your own coping skills. You can still tell your teenager, for instance, that you’re concerned about him self-infusing on that camping trip. But try to process your feelings before you help your children process their own. “If parents can normalize stress, and deal with it, kids will hopefully follow their lead. Remember that you’re the role model,” Geary says. Try new remedies. Through social networking you may hear about other coping techniques, says Geary. Stress journals, which let you record your feelings in a safe place, can help some families. Mindfulness training, during which you fully focus on the present moment, can help relieve stress. Physical techniques, such as deep breathing, meditation and yoga, also can help. And remember the importance of sticking to a healthy diet and getting adequate sleep. Because everyone responds to stress differently, a certain technique may help some people more than others. So try more than one. Get professional help when needed. Sometimes little stressors become big issues, even when you’re trying to cope. If periods of stress stretch from days to weeks, you may need to seek help. Also reach out if you or a loved one feel so overwhelmed that going to school or work is difficult. And if family members are thinking about hurting themselves—or if you are— talk to a trusted social worker, counselor or other professional, Geary advises. “If you’re involved with an HTC, that’s where you should turn first,” Geary advises. There you’ll find staff who know you and your family. And a physician or social worker can quickly direct you to helpful resources.

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What is HPPS? Hemophilia Patient and Program Support (HPPS) is a 501 (c) (3) charitable and educational organization created by the Eastern Pennsylvania Chapter of the National Hemophilia Foundation. HPPS was founded to provide funds for community outreach, education and resources to individuals with hemophilia and von Willebrand Disease residing

within the geographic boundaries served by the Eastern Pennsylvania Chapter. HPPS is dedicated to ensuring that patients continue to receive the highest quality of care and services at affordable costs. Working in collaboration with the Eastern Pennsylvania Chapter, HPPS will provide additional funding to help the Chapter meet patient and program needs.

Participating Companies –

Accredo, CVS/Caremark, NCHS, Walgreens provide: • a full range of services to meet your needs (pharmacy, delivery, support, financial counseling, etc.) • a toll free number and pharmacists, 24 hours a day, with overnight shipment – regardless of your location • adequate inventory of factor, supplies and medicines to meet your needs both on a short- and long-term basis • financial help for patient life needs, when need is determined • services to people with pre-existing medical conditions

• information about the costs for medications and services and will inform you of any changes to those expected costs • help with insurance-related issues and notification of any company policy regarding discontinuation of services related to loss of coverage or inability to pay • notification of all product recalls and withdrawals within one business day • assurance that your confidentiality will be maintained

EPC Men’s Group The EPC Men’s Group hosted a fun family event at a Hershey Bears hockey game this past February. Our group of 21 people joined a sell-out crowd at the Giant Center to watch the Bears, and enjoy treats at the concession stand! If you are interested in learning about future programs, please call Curt Krouse at 215-393-3611. A special thank you to Pfizer for supporting the Men’s Group. The goals of the EPC Men’s Group are the following: 1. Provide Support by sharing experiences and knowledge on, but not limited to: • new, traditional, or non-traditional treatments • insurance • school/employment • confidentiality • pain management medical concerns related to the normal aging process, and how to treat them • financial assistance or tips for growing older comfortably 2. Mentor and Educate young adults and fathers so they may be prepared for any challenges ahead 3. Advocate on issues affecting the adult and youth hemophilia population through one voice with a consistent message that focuses on Access to Care 4. Provide Networking opportunities so that patients and caregivers can meet others in their community at various educational and social settings, which will hopefully lead to meaningful and long-lasting relationships

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Eastern Pennsylvania Chapter of the National Hemophilia Foundation 14 E. Sixth Street, First Floor, Lansdale PA 19446 • 215-393-3611 • www.hemophiliasupport.org

Washington Days Recap Patient advocates and their families from the Eastern Pennsylvania Chapter joined others from across the country to participate in the annual NHF Washington Days, which is the premiere advocacy event on Capitol Hill for the bleeding disorders community. This was held from February 25-27. EPC met with elected officials to educate them on our unique needs. This included representatives from the offices of Congressman Brendan Boyle, Patrick Meehan, Michael Fitzpatrick, Ryan Costello, Tom Marino and Matt Cartwright, as well as the office of Senator Bob Casey. The three topics discussed were continued funding for hemophilia treatment centers, access to skilled nursing facilities for patients with hemophilia, and stronger support for the Patients Access to Treatments Act. EPC will continue this important

work at the state level in Harrisburg on Monday, April 20. If you are interested in joining us, please call the office at 215-393-3611.

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Enjoy lunch and special programs at Penn State Hershey Medical Hospital’s Conference Center from 12:30-3pm. The fun continues with 2 hours of unlimited Miniature Golf, Go-Karts and Bumper Boats at Adventure Sports in Hershey from 4:30 pm - 6:30 p.m. Phone or email to: Curt Krouse, Eastern Pennsylvania Chapter National Hemophilia Foundation O: 215-393-3611 [email protected]

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Register for Team Spin Factor for Hemophilia! Saturday, May 9th, 2015

Routes: 12, 35 or 75 mile options Ride starts at 8:00AM at Highline Park (31st & Chestnut) Registration: milliondollarbikeride.org

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Eastern Pennsylvania Chapter of the National Hemophilia Foundation 14 E. Sixth Street, First Floor, Lansdale PA 19446 • 215-393-3611 • www.hemophiliasupport.org

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Spin Factor for Hemophilia

Illustration by John Haslam

Kids

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By Kadesha Thomas Smith | 02.02.2015 Originally Published February 2015 HEMAWARE.org

Hey, Sleepyhead 7 tips for a good night’s rest When your mom’s cellphone battery runs down, she charges it. And that’s what sleep does for us, too! A good night’s sleep gives your body rest and stores up energy for the next day.

But many of us are not getting enough sleep to fully recharge. Kids ages 5 to 12 years old need about 10–11 hours of sleep each night. So if you need to wake up by 7 a.m. in time for school, you’ll want to hit the sack by 8 or 9 p.m.

It may be fun to stay up late watching TV or playing games, but if you don’t rest, you may get sick more and miss play time with friends! Not getting enough sleep can lead to more colds, flu and stomachaches. That means missing school and being stuck inside the house. Sleep also helps you get better after an illness, injury or surgery. That’s why rest is so important if you’ve had a bleed. Sleep lets your body focus on fixing itself. You know you’re not getting enough sleep if you: • Feel sleepy after you wake up. • Sleep late on weekends and days when you don’t have school. • Get tired during the day and wish you could take a nap. 1

Here are seven tips to get a good night’s sleep: 1. Get moving! All that time on the playground and playing with friends can help you sleep longer at night. 2. Go to bed and get up at the same time every day, even on weekends. 3. Don’t play with video games or a cellphone after you get in bed. It’s tough for your body to wind down afterward. 4. Ask Mom or Dad to read a book with you every night. Having a routine like this helps your body know it’s time for bed. 5. Don’t eat big meals right before bedtime. Try having a warm glass of milk or a healthy snack instead. 6. Don’t drink sugary sodas, especially in the afternoon or night. Many sodas contain caffeine, which can keep you up and make you jittery. 7. Ask your parents to help make your bedroom feel cozy. A cool, dark and quiet bedroom helps you fall asleep. With this advice in mind, you’re on your way to getting a great night’s sleep—every night!

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1. Not getting enough sleep can lead to more of these. 4. Sleep helps you get better after this. 6. Ask Mom or Dad to do this every night. 7. A warm glass of this can help you fall asleep. 9. This can keep you up and make you jittery.

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2. What gives your body energy for the next day? 3. Avoid playing these games before bed time. 5. Having this helps your body wind down. 7. Tip one to get a good nights sleep. 8. If you want to do this during the day then you are not getting enough sleep. The Winning Spirit Spring 2015

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Answers Across: 1. colds 4. injury 6. read 7. milk 9. caffeine Down: 2. sleep 3. video 5. routine 7. moving 8. nap

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