Live, Laugh, and Lasting Friendships

HemophiliAction A publication of the Hemophilia Foundation of Southern California Volume 6 • Issue 4 • Spring 2010 Live, Laugh, and Lasting Friend...
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HemophiliAction A publication of the Hemophilia Foundation of Southern California

Volume 6 • Issue 4 • Spring 2010

Live, Laugh, and Lasting Friendships Camp Blood Brothers and Sisters

Photos provided by the Painted Turtle

Hemophilia Foundation of Southern California 6720 Melrose Avenue Hollywood,CA 90038 Tel: 323-525-0440 Fax: 323-525-0445 [email protected] www.hemosocal.org

HemophiliAction

HemophiliAction is published quarterly by: The Hemophilia Foundation of Southern California DISCLAIMERS The Hemophilia Foundation of Southern California (HFSC) does not endorse any particular pharmaceutical manufacturer or home care company. PLEASE NOTE: The companies whose advertisements are listed herein have purchased this space, and are NEVER provided with members’ names, addresses or any other personal details. Paid advertisements should not be interpreted as a recommendation from HFSC, nor do we accept responsibility for the accuracy of any claims made by paid advertisements. Since we do not engage in the practice of medicine, we always recommend that you consult a physician before pursuing any course of treatment.Information and opinions expressed in this publication are not necessarily those of the HFSC, or of its editorial staff. Material printed in this publication may be reprinted with express prior written permission from the Executive Director.

Board of Directors Dr, Richard Metz, President Tamara Kato, Members: V.P. Fundraising Melissa Franzen, Greg Mermilliod, VP Board Development Treasurer Judy Mangione Doris Quon, MD, Medical Director Giovanny Pernudi Alona Metz Secretary

Staff Linda Corrente, Executive Director Helena Smith, Sr. Office Manager Grace Yi, Office Manager Natalie Simons, Special Events & Program Assistant

Special Thanks Tamara Kato, Proofreader Angie Yanez, Spanish Translation Linda Corrente, Editor Mark Elias, Art Director Hemophilia Foundation of Southern California 6720 Melrose Ave. Hollywood, CA 90038 Tel: (323) 525-0440 Toll Free: (in CA only)(800) 371-4123 Fax: (323) 525-0445 E-mail: [email protected] Web: www.hemosocal.org

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President’s Report I am pleased to report that our Foundation continues to do extremely well with our programs and fundraising activities. Family Information Day with many excellent speakers covering topics from medical issues to insurance and advocacy is coming on March 27. The Board of Directors and I are looking forward to greeting you all there. The Board of Directors held its annual strategic planning meeting this past month. Our main focus was the recruitment and development of a diversified Board to represent our community. Since the Board became non-industry based to avoid potential conflicts of interest, the number of Board members has declined. Serving on the Board of Directors is a very rewarding experience and a way to really help our community. The time commitment is not great. We have an in-person meeting only once per quarter and a one hour conference call on the other months. We are looking to fill four positions at present. Skill sets for which we are seeking include accounting, investments, legal, technology and

Dr. Richard Metz

communication skills. We also want to balance our Board with diversified members of our community who may not have any of these particular skills. Please contact me or Melissa Franzen, who is Chairman of Board Development if you

Reporte del Presidente Estoy orgulloso se reportarles que nuestra Fundación continúa estando extremadamente bien con nuestros programas y actividades de recolección de fondos. En marzo 27 será el Día de Información Familiar con muchos presentadores hablando de una variedad de temas, de problemas médicos a seguros y advocación La Junta Directiva y Yo esperamos verlos ahí. La Junta Directiva tuvo su reunión de planeación anual el mesa pasado. Nuestro enfoque fue el reclutamiento y desarrollo de una Junta diversificada para representar a nuestra comunidad. Desde que la Junta se convirtió de miembros de la comunidad solamente para prevenir conflictos de interés, el número de Miembros de la Junta ha bajado. Servir en la Junta Directiva es una experiencia recordatoria y una gran forma de ayudar a su comunidad.

El compromiso de tiempo no es mucho. Tenemos una reunión en persona una vez cada tres meses y una conferencia por teléfono de una hora cada segundo mes. Estamos buscando en llenar cuatro posiciones en este momento. Habilidades en que estamos buscando incluyen contabilidad, inversiones, legal, tecnología, y habilidades de comunicación. También queremos balancear la Junta con miembros diversificados de nuestra comunidad que no necesariamente tengan estas habilidades. Por favor comuníquese con Melissa Franzen, que es la Directora del Desarrollo de la Junta si tiene algún interés y ella le puede dar más detalles. Recientemente, Linda Corrente y Yo participamos en el Fin de Semana de Liderazgo de la Fundación Nacional de Hemofilia (NHF) y Días de Washington. El fin de semana nos dio

have an interest, and we can give you further details. Recently, Linda Corrente and I attended National Hemophilia Foundation’s (NHF) Leadership Weekend and Washington Days. The weekend gave us a wonderful opportunity to network with other chapter Presidents and Executive Directors from all over the country. We learned many best practices and tools which will help our Foundation as well as help us receive updates on health care reform and other important issues. There was an amazing turnout for our day on the hill with over three hundred participants. We advocated for continued direct funding for our Hemophilia Treatment Centers which was in danger of being eliminated from the Center of Disease Control (CDC) and health care reform issues such as elimination of lifetime caps and preexisting conditions.

Finally, I had the privilege of attending NHF`s workshop on Gene Therapy and Novel Technologies. It was truly inspiring to see so many dedicated scientists working on improved therapies and ultimately a cure for hemophilia. In the shorter term new bioengineered Factor 8 and 9 molecules with a longer duration of action will offer the ability to do prophylaxis less frequently such as once per week. Genotyping our community members may allow us to identify a minority

una gran oportunidad de hablar con otros Presidentes y Directores Ejecutivos de las diferentes ramas y de todo el país. Aprendimos muchas buena practicas y herramientas que ayudara California delegates attend training at Washington Days a nuestra Fundación a también Finalmente, tuve el privilegio de a recibir actualizaciones participar en el taller de NHF sobre la reforma de salud y otros de Terapia Genética y Novel temas importantes. Tuvieron una Technologies. Fue una inspiración participación espectacular para ver la dedicación de los científicos el día en la montaña con más de trabajando para mejorar las terapias trecientos participantes. Abocamos y por último una cura para la por el patrocinio directo de hemofilia. En otros términos nueva Nuestros Centros de tratamiento ingeniería bioquímica de factor 8 los cuales están al peligro de ser y 9 de moléculas con una duración eliminados por el Centros de mas larga de acción le ofrecerá Enfermedades (CDC) y problemas la habilidad de hacer profilaxis de reforma de salud tales como el menos a menudo tal como una vez eliminar el máximo se seguros y al mes. El hacer genotípico de los condiciones pre-existentes. miembros en nuestra comunidad nos

of individuals for which an oral therapy could be used. Ultimately, advancements in Gene Therapy with stem cell research may lead to a more permanent solution or cure, but this still looks to be much further in the future. Still there is progress as we continue our quest for improved care and outcomes. Richard J. Metz, M.D. Hemophilia Foundation Southern California

permitirá identificar una cantidad de individuos para los cuales se pueda usar la terapia por boca. Últimamente, los avances de terapia génica con investigación de células madre puede llevar a una solución mas permanente o una cura, pero todavía se ve muy lejos en el futuro. Aun todavía hay progreso y continuamos nuestra búsqueda para mejorar los resultados. Richard J. Metz, M.D. Presidente, Fundación de Hemofilia del Sur de California HemophiliAction

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Executively Speaking “The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.”-- Helen Keller This quote sums up the spirit that our Board of Directors, staff, and donors emulate to make the Foundation services and programs one of quality and worth. No one knew what 2010 would bring. The unpredictability of the stock market was abundantly clear. While we can not control the markets or the economy, we can control how we react to the market’s inevitable volatility. And at the Foundation, we did convene often to make sure we were prepared financially to secure our future programming. The beautiful things we felt in our hearts after our tremendous attendance at our last year’s Family Information Day and the Walk led us to a 2010 program that includes more opportunities for the community to be together to live, laugh and make lasting friendships. “To be rich in friends is to be poor in nothing”--Lillian Whiting. Yes, we have extended our friendships to social networking on Facebook. I invite you to be a friend (Fan) of the Hemophilia Foundation of Southern California and join Facebook and get the latest updates and connect with one another virtually. This year, we are energized to connect with you in person at our programs scheduled throughout the year.

Washington, DC

“Las mejores cosas y las cosas mas lindas en el mundo no se pueden ver o tocar. Se deben sentir en el corazón”-- Helen Keller Esta frase describe el espíritu de nuestra Junta Directiva, empleados, y donantes emulan para hacer los servicios y programas de la Fundación una de calidad y valor. Nadia sabía lo que traería el 2010. Lo impredecible del mercado financiero fue abundantemente claro. Mientras no podemos controlar el mercado o la economía, si podemos controlar como reaccionamos a la inevitable volatilidad del mercado. En la Fundación, nos reuníamos a menudo para asegurarnos que estuviéramos preparados en la parte financiera para asegurar el futuro de nuestros programas. Lo lindo que sentimos en nuestros corazones después de la tremenda participación en el Día de Información familiar y la Caminata nos llevo a programas del 2010 que incluyen más oportunidades para la comunidad junta para reírse, y hacer amistades para siempre. “El ser rico en amistades, es no ser pobre en nada.”—Lillian Whitting. Si hemos extendido nuestras amistades a una red social de Facebook. Los invito a que sean mis amigos (a) de la Fundación de Hemofilia del Sur de California y únase a Facebook y adquiera las ultimas actualizaciones y conéctese con cada uno en una forma virtual. Este año, estamos enérgicos de conectarnos con usted en Persona en nuestros

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The year began with meetings in Orange County and Riverside County. To celebrate World Hemophilia Day on April 17, we will be at American Girl at The Grove in Los Angeles and learning about von Willebrands. In May, we will be traveling to Ventura County and also hosting a teen and young adult event in Los Angels at the LaBrea Tar Pits. Summer and fall will be the time for the 27th annual Camp Blood Brothers and Sisters summer camp at The Painted Turtle and the family and camp reunion retreat in Malibu. And October brings us to the 2nd annual Southern California Hemophilia Walk on October 9 at the LA Memorial Coliseum. Our Walk placed second in teams and fundraising of ten chapters nationwide. We were number one in spirit as I was asked to be a speaker at the National Hemophilia Foundation Walk training on Walk Spirit and Public Relations. The Walk was a public display of the strength of friendship and connection of the bleeding disorder community and friends. And you know what I say, with the right shoes, you can do anything! So get your walking shoes ready and let’s walk as every step makes a difference in the lives of so many. Join me at our many events planned for this year. You are one of my nicest thoughts. Linda Corrente Executive Director

Californian delegates on the hill

programas organizados a través del año. El año empezó con reuniones en el Condado de Orange y Riverside. Para celebrar el Día Mundial de Hemofilia en abril 17, estaremos en American Girl en el Grove en Los Angeles y aprenderemos sobre von Willabrands. En mayo, viajaremos a Ventura y también tendremos un evento para jóvenes y adultos jóvenes en Los Angeles en La Brea TarPits. El verano y otoñó serán temporadas para el campamento 27 de Camp Blood Brothers & Sisters en Painted Turtle y la reunión del campamento y retiro familiar en Malibu. Y octubre trae la segunda Caminata anual del Sur de California en octubre 9 en el Memorial Coliseum. Nuestra caminata llegó en segundo en los grupos y recolección de fondos de diez ramas de todo el país. Fuimos los primeros en espíritu ya que me pidieron que hablara en el entrenamiento de Caminatas de la Fundación Nacional de Hemofilia sobre Espíritu de Caminata y Relaciones Publicas. La Caminata fue una demostración pública de la fuerza de amistades y conexión de la comunidad con enfermedades sanguíneas y amigos. ¡Y ustedes saben lo que Yo digo, con los zapatos adecuados, podemos hacer cualquier cosa! Así que prepare sus zapatos de caminata y caminemos cada paso hace una gran diferencia en las vidas de tantos. Únase conmigo en uno de los muchos eventos planeados este año. Ustedes están en mis mejores pensamientos. Linda Corrente Executive Director

In Memory and In Honor ( November 1, 2009- March 15, 2010) Donations Made In Honor/Los donativos Hicieron En el Honor Eric Evanson Sandra Bland Josh Epport Footlik Karen Epport Jose Jimenez Jr. Romelia Jimenez

Nickolas Frigone L. A. Frigone Luverne F. Hays Chris J. Hays Joseph F. Hays Tom Hays Theresa Hays-Horner Richard Katz Ruth K. Wolf Jeanne McKay

Erik Johnson G. Beverly Bregmann

Kevin Linn Betty Lurie

Israel Vasquez Jr. Israel & Laura Vasquez In Memory/En Conmemoracion

Jerry Maldin Sylvia Padrón Family

Arron Velez Antonio Velez

Todd Pittman Judith & Wilmer Pittman

Donnie Butler Diane E. Haun

Mike Rose Pam & Ben Rose

Mark DeMille Catherine & Donald DeMille

Michael Schmidt Sandra Schmidt Mary J. Wallis Mark Leone Camp Fund

Ruben Dorame Consuelo Dorame

Patricia Lehmann Catherine Leone & Keith Lehmann

Louis Frigone

Hemophilia Health Services

...for the human factor

®

REST INSURED.

Trust the Experience At CVS Caremark, we’ve been helping families like yours for over 30 years. Our caring patient support helps ensure safety, convenient access and satisfaction. www.caremark.com ©2010 Caremark. All rights reserved.

Marilyn August Regional Manager Toll-free 1-800-980-1788 or 1-909-815-1249 [email protected]

We understand how costly and unpredictable living with bleeding disorders can be. That’s why our exclusive therapy support program includes a team of reimbursement specialists to help navigate the insurance process for you. Whether verifying coverage or tracking lifetime maximums, we take the burden off your shoulders so you can enjoy life with a little more ease. A personal touch from people who know bleeding disorders.

1 888 709-6004 Accredo Health Group, Inc., is a wholly owned subsidiary of Medco Health Solutions, Inc. © 2009 Medco Health Solutions, Inc. All rights reserved.

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2009 Donors: Thank You for your Generosity! Titanium Sponsors ($50,000 & above) Baxter BioScience Novo Nordisk Philip & Aida Leone Platinum Sponsors ($25,000-$49,000) CSL Behring Bayer Healthcare Silver Sponsor ($15,000-$24,999) Bronze Sponsors ($10,000-$14,999) Factor Support Network Pharmacy Pfizer, Inc. Copper Sponsors ($5,000-$9,999) Catherine Leone & Keith Lehmann Grifols USA $1,000-$4,999 Accredo’s Hemophilia Health Services Acme Healthcare Baxter Employee Run Baxter Golfers Biomed Pharmaceuticals Biomat USA, Inc. Brothers Healthcare Caremark Therapeutic Services Coram Hemophilia Services Crescent Healthcare, Inc. Edison International Gary Johnson Greg Mermilliod Guided Alliance Healthcare Services Herndon Pharmacy Homecare for the Cure Lisa Richards Matrix Health National Cornerstone Healthcare Services Orthopaedic Hospital Patrick McKeown Prudential Overall Supply Red Chip Enterprises Rudi Schulte Foundation Scott Carthey United Way Walgreens/Optioncare $500-$999 Care 4 Infusion, Inc. City of Hope Medical Center Community Health Charities Diane & Ralph Haun Ellis Sulser Employees Charity Organization of Northrop Grumman Garry Chan Hemophilia Alliance Hope at Home James Hardeman Linda Howit OSO Homecare Patricia Lehmann Randy Bohart Raymond Liu Richard & Jane Metz Robert L. Parkinson Jr. Robert Rodriguez Rudi & Berta Schulte Angles Sempra Energy Shawn Simmons Westmont Asset Management $100-$499 Blessed Sacrament/8th graders Aaron Bovberg Able Associates Research Group Advanced Clinical Alison Spiegel Allstate Giving Alona Metz Amy Calderon 6 HemophiliAction

Amy Pedersen Andy Heltborg Angela Sutter Anita Putnam Antonio Rosas Barry A. Friedman Beatrice Taga Bernie Stowers Berton Bradley Best Buy Burbank Best Buy W. Hollywood Best Buy W. Los Angeles Best Buy Woodland Hills Betty Emery Birndolf Law Offices Black & Decker Blue Shield Cares Brad Sporer Brendan Ward Brian & Sherry Hoven Brian Fish Brian Norton Brian Taylor Candace Soo Hoo Carol Kasper, MD Carolina Bowers Catherine Kavanaugh Cathy Bloomberg Charles & Eleanor Lister Charles & Betsy Cook Charles Howard Cheri Labianca Cherie Guillow Cheryl L. Strahl Children’s Hospital of Los Angeles Children’s Hospital of Orange County Chiu-yu Lok Christina Castaneda Christina Defloria Christine Morgan Clay McCrea Clem Adkins Clyde E. Brawner Jr. Corey Dubin Corey Parker Corinne McKean Daryl Bruggeman David Holliday David Horwitz David Ulich Deborah Kravitz Deborah Shimasaki Derek Vanrheenen Diane Stanley Dianna Stokotelny Donna Armstrong Family Doreen King Doris Quon, MD Dorothy Hokoyama Dr. Kaye-Jolgren Dreena Edora Dunn Group Dustin Burseth Dustin Cervantes Dwayne Rheenen Earlene Allison Eddy Estrada Edgar Kusnohadi Eiji Nakamura Elie Gindi Emily Castro Emily Johnson Eric Smith Eugene & Beverly Stoops F.B. Kaplan Fidencio Madero, Jr. Francis Luongo Frank Stefkovich Friends of Jasin Pabon G. Beverly Bergmann Gary Lite George Martin Gerald & Mary Lou Mermilliod Gerardo Armendariz Gisela Stowers Grant Gordon

Greg Ware Guy Young Gwen Migliaccio Gwen Santer Hansa Tooling & Engineering Harold Jr. Heather Almond Helen Lee Helen Norris Helena Lake Hemophiliac Support Systems, Inc. Hiroyuki Taga Howard Simon Irving & Muriel Metz Israel & Laura Vazquez J. Gordon McComb, MD Jacalito Grill Inc. Jackie Corral Jaime Morales James Franzen James Harker James Luck Javier Espinoza Jay Glick Jeannette & Renan Pulecio Jeff Griffith Jeffrey & Mary Wright Jennifer Arnold Jim Meeks Joan Parker Joann Cunningham John Bacich John McKie John S. Park Jonathan Hall Joo Sim Jose Corral Jose Rojo Jose Rosas Joseph & Louise Truxaw Joseph Blum Joseph Caliboso Josephine Li-McLeod Joy Amundson Judith Pittman Karen Arrieta Karen Glenn Karen Putnam Karla Kemp Karlene Dockery Katherine McDonald Kathleen Rooney Kathy Diep Kenneth Hatfield Kerri Boeddeker Kevin Isago Kieran Saul Kim Lucas Kimianne Thomas L.A. Frigone Lance Ikemoto. Lars Mueller Laura Cox Laura Grinsell Lawrence Guiheen Lee Caldwell Lester Wong Linda Asano-Baumgard Linda Bruce Linda Chamberlain Linda Clough Linda Corrente Linda Holmes Linda Leigh Sulser Linda Swanson Lindsay Phillips Lisa Malby Lonny Pfau Lori Cappello Marco International Maria & Larry Parker Marianne & George Bakic Maribel Goloskie Marie Kennedy Marilyn August Marissa Goldberg

Mark Rogo Marshal Fichman Marvin Uzqueda Mary Jane Wallis Mary Nagler Matthew Johns Maureen Babbitt MB Kapadia Meldon C. Levy, MD Michael & Melissa Franzen Michael Baldridge Michael Chaikin, MD Michele Stilton Miguel Flores Mike Down Hole Stabilization Musumi Iwanga Nancy Leonard Nancy Martz Nancy Nyznyk Nena Onwuka Nicholas Pimienta & Leticia Cisneros Nicole Wruck Oscar Patena Patricia Lee Patrick Johnson Pauline Wong Peter Frey Peter & Joan Parker Peter Sartini PharmPlus Resources Philip Strahl Regan Ostroot Rhoda Macy Richard & Jane Metz Family Trust Richard Kaplan Richard Protzel Robert & Patricia Dawdy Robert de Marco Robert Friedman Robert Linares Robert M. Bard Robert Mayer Robert Numerof Robin Burns Rodney Dickson Romelia Jimenez Ruben Laroza S Loo Saman Rehfahzadeh Sandra Ballesteros Sandra S. Schmidt Sandrine Gaillard Scott & Judy Nakamura Scott Vollet Shanna Herrick Sharon Hylton Sharon Soo Hoo Sheri Schneider Sondra Cornwell Stefan Genchev Stephanie Pirolo Stephen & Toni Dowling Steven Klingenberg Susan Brown Susan Quon Suzanne Galen Suzanne Martin Sylvia Padron Tamara & David Kato Teresa Hays-Horner Teresita Reyes Theresa Arevalo Therese Hokoyama Timothy Stowers Tony & Karen Arrieta Tracie Wilk Truist Altruism United Airlines V. Smith Victor Espinosa Victoria Cervantes Viki & Gary Miller Wagner Lemus William & Beatriz Martinez Wood Lau Zan & Dixie Olson

Message From Melissa Thank you for allowing me to introduce myself. My name is Melissa Franzen, and I am the mom of an amazing 5-year-old boy with Hemophilia. Since my son’s diagnosis at 8 months old, it has been a goal of mine to be sure that he would live a normal and productive life. I want him to be free of any major long-term health problems caused by Hemophilia. Through education, finding the best regular care available for my son and becoming involved in the Hemophilia community, we have so far succeeded at this goal. Hemophilia Foundation of Southern California (HFSC) has helped us by providing local gatherings with support and education, as well as summer camp from which my family will greatly benefit and cherish forever. I realize that these wonderful programs are available to us only because of the caring people ahead of us that have taken the time to volunteer and get involved.

disorders community. As a member of the HFSC Board of Directors, I am able to help ensure these caring services and resources continue to grow and be available for generations to come. I have been involved in planning regional events, outreach for newly diagnosed families, and most importantly, I am proud of my part in the Foundation’s First Hemophilia Walk last year. It was exciting to see so many families and friends come out to show enthusiasm and support. The Board is currently accepting applications for board positions, and we invite you to give serious consideration to a nomination.

As you consider this opportunity, we ask you to think about how you could actively contribute to making a difference in the bleeding disorder community. If you have any questions, please contact me at 805-681-4890 or email me at [email protected] or you can contact our Executive Director Linda Corrente at 323-525-0440 or email at [email protected] sbcglobal.net.

Our HFSC began over fifty years ago out of the vision of a few individuals who saw the need and importance of uniting in an effort to provide information, education, and improved treatments that would keep their loved ones alive and enhance care. Over the years, our Foundation has continued this mission and grown to meet the ever changing needs of the bleeding Gracias por permitir que me presente. Mi nombre ese Melissa Franzen, y soy la madre de una fantástico niño de 5 años con Hemofilia. Desde el diagnostico de mi hijo a 8 meses de edad ha sido una meta mía de asegurarme de que el viviera una vida normal y productiva. Quiero que el sea libre de cualquier problema de largo plazo causado por hemofilia. A través de educación, el encontrar el mejor cuidado disponible para mi hijo e involucrarme en la comunidad hemofílica, hasta ahora hemos sobre pasado esa meta. La Fundación de Hemofilia del Sur de California (HFSC) nos ha ayudado en mejorarnos al proveer reuniones locales con apoyo educacional y también los campamentos del verano del cual mi familia ha beneficiado y los apreciaré para siempre. Me doy cuenta que estos programas están disponibles para nosotros solo por que hay gente bondadosa que ha tomado el tiempo para ser voluntarios e involucrarse. Nuestra HFSC empezó hace mas de cincuenta años con la visión de pocos individuos que vieron una necesidad e importancia de unirse con el esfuerzo de proveer información, educar, y mejorar los tratamientos que mantendría a sus queridos vivos y mejoraba el cuidado. A través de los años, la Fundación ha continuado esta misión y ha crecido para satisfacer los

The next several years promise to be important ones for HFSC, because of the impending healthcare legislation, new treatments on the horizon and evolving needs of the community. The Board plays an important role in helping families obtain access to information, care and support. A primary responsibility of Board members is to participate in the development of policy at board meetings held once a month. Another key responsibility is to be active on a Board committee. Some of the committees include fundraising, board development, community outreach, youth programs and other programs.

Sincerely, Melissa Franzen,VP, Board Development Hemophilia Foundation of Southern California

cambios y necesidades de la comunidad con enfermedades sanguíneas. Como miembro de la Junta Directiva de HFSC, puedo asegurarme de que estos servicios y recursos continúen creciendo y que estén disponibles par las generaciones del futuro. He estado involucrada en la planeación de los eventos regionales, alcance a las familias recientemente diagnosticadas, y mas importante, estoy orgullosa de ser parte de la Primera Caminata de Hemofilia del Año pasado. Fue agradable ver a tantas familias y amigos venir y demostrar su entusiasmo y apoyo. La Junta esta aceptando aplicaciones actualmente para posiciones de la Junta y los invitamos a que consideren seriamente una nominación El próximo año promete ser muy importante para HFSC, por la legislación de salud pendiente, nuevos tratamientos en la vista

y la evolución de las necesidades de la comunidad. La Junta toma un gran papel en ayudar a las familias en obtener acceso a información, cuidado, y apoyo. La responsabilidad primaria de los miembros de la Junta es de participar en el desarrollo de pólizas en las juntas hechas una vez al mes. Otra gran responsabilidad es de ser activo en el comité de la Junta . Algunos de los comités incluyen recolección de fondos, desarrollo de la Junta, alcance a otras familias, programas para jóvenes y otros programas Mientras considere esta oportunidad, les pedimos que piense como pude contribuir en hacer una gran diferencia en al comunidad con enfermedades sanguíneas. Si tiene alguna pregunta, por favor comuníquese conmigo al 805-681-4890 o por correo electrónico al [email protected] o puede comunicarse con Nuestra Directora Ejecutiva Linda Corrente al 323-525-0440 o por correo electrónico al [email protected] net. Sinceramente, Melissa Franzen,VP, Desarrollo de la Junta Fundación de Hemofilia del Sur de California HemophiliAction

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Southern California Regional Community Update It has been a busy couple of months here at the Foundation! Not only did we announce October 9th for our 2010 Walk date, but we also held two regional educational community meetings! Our first event took place at Buca Di Beppo Restaurant in Brea. It was an exciting Valentines event for all of our Orange County area families and was hosted by Catherine Leone and Keith Lehman, who generously provided lunch and Valentines goodies for everyone. HFSC would like to recognize Catherine and Keith for being outstanding leaders for the Foundation and for volunteering their time for our Orange County families. The Leone Family is also the founder of the Mark Leone Camp Fund, which sends many of our youths to medically staffed summer camp each

year, and it is in memory of Catherine’s brother Mark. Thank you Leone Family! Grace Hernandez, P.T. who works with the Children’s Hospital of Orange County (CHOC) Hemophilia Treatment Center was able to attend and give some great advice on how to stay active, as well as answer questions that our families had regarding bleeding disorders and exercise. Local Walk Manager Natalie Simons also talked about our upcoming 2nd Annual Walk and encouraged everyone to sign up at www.hemophilia.org/walk. It’s never too early to register and begin fundraising! We had a great group in attendance last year, and fun and good food was had by all. Once again, special thanks to Catherine and Keith for being great hosts and providing some delicious red velvet cupcakes!

Orange County regional meeting

Our second community event of 2010 took place in Riverside at the home of the Guillow Family. Despite the pouring rain, our Inland Empire families braved the drive in order to share a great afternoon with everyone. As the team captain of Jarret’s Joggers at last year’s Hemophilia Walk, and one of our top fundraisers, Cherie Guillow was able to give some great advice on getting sponsorships and raising money for the Walk. We learned that it is important to personalize your emails or letters and to not be afraid to send to everyone in your address book. You might be surprised at who wants to support your cause! Thanks again to the Guillow family for opening up their home to us. We all had a wonderful time.

Linda Corrente Thanks Keith Lehmann and Catherine Leone for hosting the Orange County luncheon

Actualización de Comunidad Regional del Sur de California ¡Han sido unos meses muy ocupados aquí en el Fundación! No solo anunciamos nuestra caminata del 2010 para octubre 9, 2010 pero también tuvimos dos reuniones regionales educativas. Nuestro primer evento tomo lugar en el restaurante Buca Di Beppo en Brea. Fue un evento de san Valentín para nuestras familias en el condado de Orange el cual tuvo como anfitriona a Catherine Leone y Keith Lehman quienes fueron proveedores del almuerzo y regalitos de san Valentín par todos. HFSC quiere darle reconocimiento a Catherine y Keith por ser unos gran lideres para la Fundación y por ser voluntarios de sus tiempo en Orange County y para sus familias. La familia Leone también es fundadora de el Fondo de Campamento Mark Leone, el cual envía a muchos jóvenes a el campamento de verano con participante médicos cada año, y en conmemoración del hermano de Catherine, Mark. ¡Gracias ala familia Leone! Grace Hernandez, Terapeuta Física, quien trabaja con el Centro de

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Tratamiento de CHOC, pudo participar y dio consejos de como mantenerse activo y contestó preguntas que nuestras familias tenían sobre enfermedades sanguíneas y ejercicio. Manejadora de la Caminata, Natalie Simons también hablo sobre nuestra segunda caminata y animo a todos a que se inscribieran en www. hemophilia.org/walk. ¡No es muy tarde para registrarse y empezar a recolectar fondos! Tuvimos una gran grupo y nos divertimos, la comida estaba rica y todos comieron. De nuevo, les damos las gracias a Catherine y Keith por ser gran anfitriones y proveer unos pastelitos deliciosos. Nuestro segundo evento en la comunidad del 2010 fue en Riverside en la casa de la familia Guillow. Aunque estaba lloviendo, nuestras familias del Inland Empire fueron valientes y manejaron en la lluvia para poder compartir una gran tarde con todos. Como el capitán del

grupo de los Jarret’s Joggers en la caminata del año pasado, y uno de los que mas recolecto fondos, Cherie Guillow pudo dar consejos de cómo obtener patrocinios y recolectar fondos. Aprendimos que es importante personalizar sus correos electrónicos y cartas y de no tener miedo de enviárselo a todos es su lista de direcciones. ¡ Se sorprenderá de los que quieren apoyar su causa! Gracias de nuevo a la familia Guillow por abrir su hogar a todos, la pasamos muy bien.

Community Resources The Alex Lieber Memorial Scholarship

Beca Conmemorativa de Alex Lieber

The Alex Lieber Memorial Scholarship will award two (2) $1,000 scholarships to help offset the expenses of a higher education. Awards will be presented to each recipient as two $500 American Express cards. The scholarship may be used to purchase text books, school fees, gasoline, airline tickets, computer hardware or software, transportation to school, housing at school or any justifiable expense related to receiving a higher education. Students must provide receipts for purchases and submit these in order to receive the second $500 card.

La Beca Conmemorativa de Alex Lieber le dará como premio dos becas de $1000, para ayudar con el costo de educación. Los premios serán entregados a cada ganador como dos tarjetas de American Express de $500. La becas se puede usar para comprar libros, gasolina, pasajes de avión, computadora o programas de computación o un costo justificable para su educación. Los estudiantes deben proveer recibos de las compras y entregarlas para poder recibir la segunda tarjeta de $500.

To be considered, applicants must. . . • Have hemophilia or von Willebrand disease. • Be accepted by an accredited college, • university, or vocational/ technical school. • Be able to demonstrate volunteer • service experience. • Agree that the funds are to be spent on expenses directly related to education as described above. We will require original receipts for all purchases made with scholarship funds. The scholarship review committee reserves the right to make all final decisions. Scholarship application deadline: June 1, 2010. If you go to our website, there is more information on Alex’s life, and photos. http://www.kelleycom.com

Los Angeles high school students are encouraged to apply for the City of Los Angeles Board of Public Works High School Internship Program for 2010. The program is now in its eighth year and offers high school students an opportunity to explore a career in the water, wastewater, architectural and environmental engineering industries. Partnering firms offer six-week, paid internships that integrate classroom learning with work-based experience. “As a result, many lives have changed because the program contributes significantly to the development of youth and creates a diverse pipeline of future architects and engineers,” Los Angeles Board of Public Works president Cynthia Ruiz said. Last year, the program placed 92 high school students with 34 wastewater engineering, architectural and environmental engineering firms in Southern California. They included CH2M Hill, DMJM Harris, DMJM H&N, Inc., HDR, John T. Malloy, MWH, Parsons Water & Infrastructure, Psomas and Tetra Tech. The application deadline is March 15, and the program runs from July 6 through August 14. For information, call Board of Public Works commissioner Andrea Alarcon at (213)978-0254, or visit www.bpw.lacity.org/ pwhip.

Para ser considerados los aplicantes deben . . . • Tener Hemofilia o von Willebrand . • Estar aceptados en un universidad acreditada, o escuela técnica • Debe demostrar experiencia de servicio voluntario • Debe estar de acuerdo de que los fondos se gastaran directamente con algo relacionado a la educación tal como libros, vivienda, transportación, o costo de escuela. Se requieren recibos originales de todas las compras hechas con los fondos de la beca. El comité de la beca revisará y tendrá el derecho de hacer las decisiones últimas . La fecha para entregar la aplicación es junio, 1 2010 Si va a este lugar, encontrará mas información sobre la vida de Alex y fotos. http://www.kelleycom.com

Estamos animando a los estudiantes de Secundaria de los Angeles a que apliquen para el programa de Residencia de la Junta de Trabajos Públicos de la Ciudad de Los Angeles para el 2010. El programa esta en su octavo año y ofrece a los estudiantes de Secundaria una oportunidad para explorar una carrera en agua, desecho de agua, ingeniería arquitectural y del ambiente. Oficinas en Acuerdo ofrecen Residencias de seis semanas pagadas las cuales se integran con aprendizaje del salón con experiencia de trabajo. “ Como resultado muchas vidas han cambiado por este programa el cual contribuye significativamente para desarrollar una juventud y crear una diversidad de arquitectos e ingenieros del futuro,” dijo Cynthia Ruiz de a Junta de Trabajos Públicos de Los Angeles. El Año pasado, el programa puso a 92 estudiantes de Secundaria con 34 en ingeniería de desecho de agua, arquitectura, en oficinas de ingeniería del ambiente del Sur de California. Estas incluyen CH2M Hill, DMJM Harris, DMJM H&N, Inc., HDR, John T. Malloy, MWH, Parsons Water & Infrastructure, Psomas and Tetra Tech. La fecha para entregar la solicitud es marzo 15, y el programa sigue hasta Julio 6 hasta agosto 14. Para mas información llame a la Junta de Trabajos Públicos y comuníquese con Andrea Alarcon al (213)978-0254, o visite www.bpw.lacity.org/pwhip. HemophiliAction

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Community Resources (continued) Local museums from across Southern California will offer a wide array of unique summer camp experiences for local children, and are encouraging parents to explore their options and register early. Participants in the museum camps can dive into the sea to explore marine life, explore the earth’s ecosystems, savor the flavor of worldly cuisine, or create a unique work of art. Participating museums include the Los Angeles County Museum of Art, the Aquarium of the Pacific, the Autry National Center, the California Science Center, the Fowler Museum at UCLA, the Huntington Library, Art Collections and Botanical Gardens, the Museum of Latin American Art, and the Muckenthaler Cultural Center in Fullerton. The camps are being held as part of a program of the Museum Marketing Roundtable, which is made up of museums in the greater Los Angeles area and promotes art, cultural heritage, natural history and science programs. Most camps are held weekly, with half day and full day schedules available, as well as extended hours. For information and a directory of participating museums, visit www.museumsla.org.

Museos locales a través del Sur de California ofrecerán una variedad de campamentos de verano únicos para niños locales, estamos animando a los padres a que exploren estas opciones y que se registren temprano. Los Participantes en los campamentos del museo pueden meterse en el mar para explorar vida marina, explorar el sistema ecológico de la tierra, y disfrutar el sabor de cocina mundial, o crear una obra de arte única. Los museos participantes incluyen el Museo de Arte de Los Angeles, El Aquarium of the Pacific, el Autry National Center, el Centro de Ciencia de California, el Museo Fowler de UCLA, La Biblioteca Huntington, Los Jardines Botanicos y Colleciones de Arte, el Museo de Arte Latinoamericano, y el Centro Muckenthaler Cultural de Fullerton. Los campamentos serán una parte del programa de mercadotecnia del Museo, el cual esta compuesto de museos de Los Angeles y promueve arte, herencia cultural, historia natural, y programas de ciencia. Casi todos los campamento serán semanalmente, con horarios de medio día y día completo, también tendrá horas extendidas. Para más información y un directorio de museos participantes visite www.museumsla.org.

Educational Participant Grants Available for NHF’s 62nd Annual Meeting ATTENTION FIRST-TIME ANNUAL MEETING ATTENDEES! The National Hemophilia Foundation is pleased to offer Educational Participant Grants for first-time attendees to its 62nd Annual Meeting, “Marching Forward” in New Orleans, Louisiana, November 11-13, 2010. The Annual Meeting enables our community to come together and exchange information on a wide variety of topics, from the basics of diagnosis to the most recent and relevant developments in treatment and technology. It is the premier opportunity for networking and support for individuals and families affected by bleeding disorders. Last year’s Annual Meeting attracted more than 2,300 participants. We anticipate that this number will continue to grow and that our gathering will become even more diverse. Eligibility In our quest to foster a more inclusive annual meeting, NHF offers a limited number of Educational Participant Grants to individuals and/ or families with bleeding disorders attending the Annual Meeting for the first time. We would especially like to provide assistance to those unable to attend due to personal obstacles or other barriers. Awards will be based on these factors, as well as on need. What the Educational Participant Grants Cover Grants may be used to cover any of the following: Airfare, Hotel, Registration Fees. Applicants may apply for grants in one or more of these categories, for a maximum of three nights and four days. How to Apply for Educational Participant Grants Application Deadline Letters must be postmarked by Friday, June 25, 2010. Where to Send the Application National Hemophilia Foundation 116 West 32nd Street, 11th Floor New York, NY 10001 ATTN: Chapter Services Department --AM Educational Participant Grants For More Information contact: [email protected]

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BAYER, the Bayer Cross, and KOGENATE are registered trademarks of Bayer. BIO-SET is a registered trademark of Biodome SAS. ©2009 Bayer HealthCare Pharmaceuticals Inc. All rights reserved Printed in USA

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The Best Camp’s Ever Been! 2010! 2010 Gonna be the best camp’s ever been! That’s the chant going around The Painted Turtle these days! We’re ramping up here for a fun-filled summer camp season—and we hope you are too! We’ve got the usual much loved programs, such as Horses, High Ropes, Woodshop, and Discovery, as well as a slew of exciting new activities and new friends to meet. This summer the Hemophilia Foundation of Southern California and The Painted Turtle will hold camp on August 6-11 at The Painted Turtle in Lake Hughes, California! Children ages 7-16 who have hemophilia, are carriers, or who have von Willebrand Factor Disorder are eligible to apply for the camp session. Make sure you don’t miss out on all the fun and get your application in early! For applications: Visit http://www.thepaintedturtle.org/turtle/ camperinfo/applications/ or contact The Painted Turtle’s Camper Recruiter, Rosalyn Sayer,

at [email protected] or at (661) 724.1768 x 203 Visit http://www.hemosocal.org/ This summer The Painted Turtle is also proud to launch our Leadership Camper (LC) program. This program is designed for 17-year-olds who are former campers or members of the medical communities we serve and it will provide a week of community, education, recreation and growth for teenagers who are in the process of becoming the leaders of their own lives. As a LC, participants join us for a week-long summer session and live in the Leadership Cabin with your peers and Leadership Counselors. Throughout the camp session you’ll take part in a variety of workshops and activities to learn different leadership skills including communication, teamwork, decision making, conflict resolution, public speaking, and role modeling. All of this will be done in the safe and fun camp environment and in

the company of many supportive peers and friends. Leadership Camper sessions this summer: Female Leadership Camper Session: June 1216, 2010 Male Leadership Camper Session: August 6-11, 2010 Leadership Camper applications can be found at: http://www.thepaintedturtle.org/turtle/ camperinfo/lit/ or you can contact The Painted Turtle at [email protected] We look forward to an incredible summer. 2010! 2010! Gonna be the best camp’s ever been!

¡El Mejor Campamento que hemos tenido! ¡2010! ¡ 2010! ¡ Será el mejor campamento que hemos tenido! ¡Ese es el dicho que se esta diciendo el Painted Turtle estos días! Estamos preparándonos para una temporada de verano llena de diversión- y esperamos que estés hay también! Tendremos los programas usuales que a todos les gustan tales como caballos, cuerdas, carpintería, y descubrimiento, y también una variedad de actividades nuevas y nuevos amigos a quien conocer. Este verano la Fundación de Hemofilia del Sur de California y Painted Turtle tendrán el campamento en agosto 6-11 en El Painted Turtle en Lake Hughes, California. Niños de 7-16 años que tienen hemofilia, son portadoras, o que tienen von Willebrand so elegibles para aplicar para la sesión del campamento. Asegúrese de no perderse de toda esta diversión y consiga su aplicación temprano.

través de la sesión del campamento tomaran parte de una variedad talleres, y actividades para aprender diferentes habilidades de liderazgo incluyendo comunicación, trabajo de equipo, como hacer decisiones, solución de conflictos, hablar en público, y como ser lideres modelo. Todo esto será hecho en una ambiente seguro y divertido en la compañía de muchos compañeros y amigos. La sesión de Leadership Camper de este verano: Sesión de Mujeres

Leadership Camper:

Junio 12-16, 2010 Sesión de Hombres Leadership Camper: agosto 6-11, 2010 Puede encontrar la solicitud para el Leadership Camper en: http://www.thepaintedturtle.org/turtle/ camperinfo/lit/ o se puede comunicar con The Painted Turtle al [email protected] Esperamos un gran Verano . ¡2010! ¡2010! ¡ Será el mejor campamento que hemos tenido!

Para las aplicaciones Visite http://www.thepaintedturtle.org/turtle/ camperinfo/applications/ o comuníquese con The Painted Turtle’s Camper Recruiter, Rosalyn Sayer, al [email protected] o al (661) 724.1768 x 203 Visite http://www.hemosocal.org/ Este verano Painted Turtle esta orgullosos de establecer el programa de Leadership Camper (LC). Este programas esta diseñado para jóvenes de 17 años de edad que fueron campistas antes o miembros de la comunidad que servimos y proveerán una semana de comunidad, educación, recreación, y crecimiento para jóvenes que están en proceso de convertirse en lideres en sus vidas. Como un LC, los participantes se reúnen para una sesión de una semana y viven en la cabaña de Lideres con sus compañeros y consejeros de lideres. A

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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. ©2009 Talecris Biotherapeutics, Inc.

All rights reserved.

Printed in USA

August 2009

KD32-0809

FACTOR SUPPORT NETWORK

Helping families with bleeding disorders since 1994

FSN is a specialty pharmacy dedicated to providing comprehensive care and support to persons with hemophilia, von Willebrand Disease and other bleeding disorders. Our services include medication therapy management, coordination of care and ancillary supplies. We provide our clients with support and advocacy resources. FSN maintains inventory of all factor therapies And assay choices to minimize delays in your care. We promote positive health outcomes helping you to achieve your highest quality of life.

• 24 Hour On-Call Support • Next Day Delivery • Infusion Log Support • Client-Centered Services • Education • Scholarships • Community Support

CONTACT Client Services Representatives in Your Area Randy DeSantis 805-402-5952 [email protected] * Edmund Merino 909-709-1083 [email protected] * English & Spanish Speaking

FSN OFFICE 877.376.4968 ▪ VISIT WWW.FACTORSUPPORT.COM

HemophiliAction

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HEMOPHILIA COUNCIL OF CALIFORNIA Vo l u m e I I

Issue 2

Advocacy Update

April 2010

State Budget & Legislative Advocacy Update HCC Sponsors Standards of Service Bill! (SB 971/Pavley)

Senator Fran Pavley (Democrat-Santa Monica) has introduced SB 971, the HCC sponsored Standards of Service bill, before the CA State Legislature for 2010. SB 971 is set for its first policy committee on April 14, 2010 in Senate Health Committee. Until the 1970’s, people with severe hemophilia suffered from uncontrollable internal bleeding, crippling orthopedic deformities, and a shortened lifespan. More recently, the production of highly purified blood clotting factors have provided people with hemophilia

2010 California Coastal Race for Hemophilia Once again cyclists from all over California will take part in the Coastal Race for Hemophilia August 15-21 to raise money for programs and services by riding over 500 miles in one week! If you would like to ride, volunteer, or just support riders from your region, contact you local hemophilia chapter.

and other bleeding disorders with the opportunity to lead normal lives, free of pain and crippling arthritis. The preferred method of treatment of hemophilia today is intravenous injection or infusion of prescription blood clotting products several times per week, along with case management and specialized medical care at a federally designated regional hemophilia treatment center or “HTC”. Pharmacies and other entities specializing in the delivery of blood clotting products and related equipment, supplies, and services for home use form a growing segment in CA. All of these entities are licensed pharmacies by the state or are located in federally designated regional hemophilia treatment centers (HTCs). According to the federal Centers for Disease Control and Prevention and the Medical and Scientific Advisory Council of the National Hemophilia Foundation, timely access to the HTCs and to appropriate products and services,

including infusion of blood clotting product, reduces mortality and bleedingrelated hospitalizations and is extremely cost effective. SB 971/Pavley will establish standards of service for entities that deliver blood clotting products and related equipment, supplies, and services for the home use for people with hemophilia and other bleeding disorders. There are currently no formal standards of service in California for providers of blood clotting products for home use for people with hemophilia or other bleeding disorders. The Hemophilia Council of CA believes it is critical to place these standards in statute for the benefit of people with hemophilia and other bleeding disorders, as well as to maintain the current cost effective model of care for future generations. For more information contact Robyn Ireland at HCC or Terri Cowger Hill at 916-446-9103.  -By Terri Cowger Hill, HCC Consultant

NHF advocates for Continued Support of CDC Hemophilia Program Approximately 300 people traveled to Washington, D.C., on February 24-25, 2010, to participate in the National Hemophilia Foundation’s Washington Days annual advocacy event. Participants focused on two key issues: maintaining federal funding for the U.S. Centers for Disease Control and Prevention’s (CDC) hemophilia program and garnering support for the private insurance reforms included in health reform. Washington Days has traditionally provided the bleeding disorders community the opportunity to educate Congress about the issues affecting our community while spotlighting the importance of the hemophilia treatment center (HTC) network. This year’s effort was particularly important because President Obama’s FY 2011 proposed budget for the CDC zeroes out the hemophilia program, reallocating the money for a “public health approach to blood disorders.” It is not clear what the CDC intends to fund under this new approach and there is no guarantee that existing hemophilia program activities will be

adequately supported. Participants this year advocated for the reinstatement of the CDC’s hemophilia program to ensure that quality of care at HTCs is not jeopardized. Rep. Tammy Baldwin (D-WI) spearheaded the distribution of a group letter to the House Appropriations Committee, asking for the hemophilia program to be maintained in FY 2011. Following their visits to the hill, participants sent email reminders to their representatives encouraging them to sign on to Rep. Baldwin’s letter. As of the time of this writing, we have more than 20 co-signers. In addition, community members have reached out to members of the House and Senate Labor-HHS Appropriation Subcommittees asking these members to add us to their lists of priority programs and support the program in committee. NHF’s DC consultants continue to meet with key stakeholders to garner support for the hemophilia program and the HTC network. For information on the status of NHF’s efforts, please visit the NHF website at www.hemophilia.org. 

The Hemophilia Council of California exists to provide public information and to coordinate activities which will promote and ensure the welfare of all California organizations representing persons with coagulation disorders and which will directly or indirectly improve the quality of life for all persons with coagulation disorders and their families in the state of California.

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Study Shows Benefits of Prophylaxis in Children with Hemophilia B The results of a study published last month in the journal Haemophilia demonstrated the benefits of a prophylactic (preventive) treatment regimen for children with severe hemophilia B using a recombinant factor IX (rFIX) product. The lead author of the study was Paul Monahan, MD, Gene Therapy Center, University of North Carolina at Chapel Hill. Monahan is also a member of the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC). The use of prophylaxis to treat children with hemophilia A is well documented. But there is limited data for such use in children with hemophilia B. The study included 25 children, six years- old or younger, with severe hemophilia B. In all, 22 of 25 (88%) of the children received routine prophylactic therapy (one to two infusions per week) with BeneFIX®, a rFIX product manufactured by Wyeth (a part of Pfizer), which also sponsored the study. The therapy typically lasted more than six months. Investigators reported an average of less than one bleed per year and

a “near complete prevention of spontaneous breakthrough hemorrhages.” The majority (77%) of the children exhibited no spontaneous breakthrough bleeds, while approximately a third (32%) experienced no bleeding. Breakthrough bleeds that did occur were resolved with 1 or 2 infusions of rFIX in 89% of episodes. Though the patient group included children who had previously experienced multiple joint bleeds, 68% of the study subjects experienced no joint hemorrhaging. Investigators also reported that safety had been established “by the low incidence of treatment-related adverse events.” Further, the authors reported that the therapy was well tolerated by patients with central venous access devices. The study, “Safety and Efficacy of Investigator-Prescribed BeneFIX® Prophylaxis in Children Less Than 6 Years of Age with Severe Haemophilia B,” was published online January 4, 2010, in the journal Haemophilia.

Estudio Demuestra los Beneficios del Profilaxis en Niños con Hemofilia B Los resultados de un estudio publicado el mes pasado en la revista Haemophilia. la cual demostró los beneficios del tratamiento regimen profilaxis en niños con hemofilia B severa usando factor IX recombinado (rFIX). El autor del estudio fue Paul Manahan MD del Centro Gene Therapy en la Universidad de North Carolina en Chapel Hill. Manahan también es miembro del Consulado Médico y Científico de La Fundación Nacional de Hemofilia (MASAC). El uso de profilaxis para tratar a niños con hemofilia A también esta bien documentado. Pero hay datos limitados para tal uso en niños con hemofilia B. El estudio incluyó a 25 niños, de seis años o menores con hemofilia B severa. En total, 22 de 25 (88%) de los niños recibieron terapia profilaxis rutinaria (uno a dos infusiones por semana) con BeneFIX® un producto rFIX fabricado por Wyeth (una parte de Pfizer) el cual patrocinó el estudio. La terapia típicamente duró por mas de seis meses. Investigadores reportaron un promedio de menos de un sangrado por año y una “casi prevención de hemorragias espontáneas.” La mayoría (77%) de los niños no tuvieron sangrados espontáneos, mientras aproximadamente un tercio (32%) no tuvieron sangrados. Hemorragias que ocurrieron fueron resueltas con 1 o 2 infusiones de rFIX en 89% de los episodios. Aunque el grupo de pacientes incluyo a niños quienes habían experimentado múltiples sangrados en las coyunturas, 68% de los sujetos en el estudio no experimentaron ningún sangrado en las coyunturas. Los Investigadores también reportaron que se ha establecido seguridad al “ Tener un incidente bajo de eventos relacionados al tratamiento .” Además, los autores reportaron que la terapia fue bien tolerada por los dispositivos de acceso de los pacientes.

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El estudio, “ Eficacia y Seguridad de Investigador- Recetada BeneFIX® profilaxis en niños menores de 6 años con hemofilia B severa,”, fue publicada en la red en enero4, 2010 en la revista Haemophilia.

Delivering Solutions That Improve Patients' Lives Entregando soluciones para mejorar las vidas de los pacientes

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I’m Unique. Like Everyone Else. Ask your doctor if you should join the FactorPlus program

Everyone has unique needs. If you or your child are currently using another product, you may want to consider Helixate FS. With FactorPlus, the Helixate FS free trial program, you can receive a supply of 6 doses, or up to 20,000 IU, of Helixate FS shipped directly to you. You’ll also receive a Welcome Kit that includes helpful advice, patient resources, and ways to connect with others like you. Just 3 easy steps to enroll 1. Print a product request form at www.FactorPlusprogram.com or call 1-866-767-4883. 2. Share the form with your doctor and discuss whether Helixate FS is right for you or your child. 3. Ask your doctor to complete the form and send it in for processing. For more information and to get started, visit www.FactorPlusprogram.com. 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. SM

Helixate FS is a registered trademark and FactorPlus is a service mark of CSL Behring AG. Helixate FS is manufactured by Bayer HealthCare LLC for CSL Behring LLC. ©2010 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA www.CSLBehring-us.com www.HelixateFS.com 09-HEL-004B 1/2010

Take Life On

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Me inscribí en FactorPlusSM, el programa de prueba gratuito de Helixate® FS, porque…

Soy único. Como todos los demás. Pregúntele a su médico si debería inscribirse en el programa FactorPlus

Todos tenemos necesidades únicas. Si usted o su hijo usan actualmente otro producto, considere Helixate FS. Con FactorPlus, el programa de prueba gratuito de Helixate FS, usted puede recibir una provisión de 6 dosis, o el equivalente de hasta 20,000 UI, de Helixate FS directamente en su domicilio. También recibirá un Kit de bienvenida que incluye consejos útiles, recursos para pacientes y formas de establecer contacto con otras personas como usted. Inscríbase en sólo tres pasos 1. Imprima un formulario de solicitud de producto en www.FactorPlusprogram.com o llame al 1-866-767-4883. 2. Muestre el formulario a su médico y pregúntele si Helixate FS es adecuado para usted o su hijo. 3. Pida a su médico que complete el formulario y envíelo para su tramitación. Para obtener más información y comenzar a participar, visite www.FactorPlusprogram.com. Es importante que informe a la FDA sobre cualquier efecto secundario negativo de los medicamentos de venta con receta. Visite el sitio web www.fda.gov/medwatch o llame al 1-800-FDA-1088. SM

Helixate FS es una marca registrada y FactorPlus es una marca de servicio de CSL Behring AG. Helixate FS es fabricado por Bayer HealthCare LLC para CSL Behring LLC. ©2010 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA www.CSLBehring-us.com www.HelixateFS.com 09-HEL-064A 1/2010

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HemophiliAction

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2010 Hemophilia Walk, Every Step Makes a Difference WHAT: • WALKERS • VOLUNTEERS • TEAM CAPTAINS

WHEN: Saturday, October 9, 2010

Sign up your walk team today by going to www.hemophilia. org/walk

WHERE: The Los Angeles Memorial Coliseum

Every Step Makes a Difference! Join us on Saturday, October 9, 2010. The Hemophilia Walk is the largest event dedicated to finding better treatments and cures for bleeding and clotting disorders, and to preventing the complications of these disorders through awareness, education, advocacy and research. WHY: Established in 1954, the Hemophilia Foundation of Southern California serves over 2000 families within the bleeding disorder community throughout seven counties. Our mission is to improve the quality of life and build community for families and individuals living with hemophilia or other bleeding disorders by offering a variety of programs and services that educate, advocate and support the needs of the bleeding disorders community in Southern California. Established in 1948, The National Hemophilia Foundation (NHF) is the premier organization in the U.S. serving the bleeding and clotting disorders community. Now in its 60th year, NHF continues to be a vital resource for prevention education and provides a network of support for Americans living with bleeding disorders and their families.

HOMECARE

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DISTANCE: 5k HOW: Sign up for the Walk online by visiting www.hemophilia.org/walk or by calling (323) 525.0440 everyone is welcome to participate! TEAMS: Form a team. Enlist as a Team Captain. Choose a Team name. Recruit team members from your circle of friends, family, co-workers, and neighbors. VOLUNTEER: Help us make our event a success. Volunteers are appreciated before and/or during the Walk. Unable to do the Walk but still want to participate? Enlist as a Volunteer. Call 323.525.0440 for more details. CONTACT: Linda Corrente, Executive Director: [email protected] sbcglobal.net Natalie Simons, Local Walk Manager: (323) 525.0440 or [email protected]

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Families with Bleeding Disorders Joining TOGETHER to help find the CURE

Registration begins at 8:30 AM/walk begins at 9:30 AM

N A T I O N W I D E

Familias con Trastornos Hemorrágicos UNIDOS para ayudar a encontrar la Cura.

Distribuimos Todo lo que las personas con Trastornos Hemorrágicos necesitan. Después donamos para la investigación la

CURA.

Es simple… Ordene su factor a través de nosotros Y ayude a curar los Trastornos Hemorrágicos PARA SIEMPRE. Hágalo por el futuro de su familia… ¡Hable ahora mismo! Epecialistas de Apoyo en Espanol

Vanessa Sandoval 909 557-8189

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see our websites www.homecareforthecure.com & www.hemophilia-information.com 18

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E N T O D A L A N A C I Ó N

340B Outpatient Factor Programs proudly offer: x x x x x x x x x

Hematologists on-call 24 hours a day, 7 days a week for your family’s peace of mind All brands of factor in a wide selection of assays An extensive list of ancillary products - plus, we never bill you or your insurance company for infusion supplies, specialty needles, port supplies, or wraps Attentive and knowledgeable Customer Service Pre-paid and mailable sharps containers at no cost to you Reimbursement Expertise with local and national payers Shipments to your home or your choice of location At-home nursing coordination services Cost-effective contracts with payers to help get the most out of your lifetime caps

All proceeds go to specialized clinical care, training, and the essential services the HTCs provide to you and your family!

If you are interested in having a 340B Program provide your factor and supplies, or if you would like additional information, please call

877-246-9520 Se habla español HemophiliAction

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Hemophilia Foundation Southern California(HFSC) CALLING ALL BIKE RIDERS! JOIN US AND SUPPORT TEAM HFSC!! The Hemophilia Council of California (HCC) and the Hemophilia Chapters of California invite you to participate in The California Coastal Race for Hemophilia! August 15th-21st The 674-mile journey starts in San Francisco winds down Highway 101 through coastal towns like Santa Cruz, Big Sur, Monterey, San Simeon, Pismo Beach, Santa Barbara, Malibu, San Clemente and finishes in San Diego with the HASDC Annual Picnic. Don’t miss this spectacular week of breathtaking views and energizing bike riding! Please Contact Natalie Simons at (323) 525.0440 or [email protected] if you are interested in participating, and to learn more about the fundraising levels. But Hurry! The Early application deadline is April 29th and there are limited spots available.

Fundación de Hemofilia del Sur de California ¡LLAMANDO A TODOS LOS CORREDORES DE BICICLETA! ¡¡UNASE Y APOYE NUESTRO GRUPO DE HFSC!! ¡El Consulado de Hemofilia de California (HCC) y las Fundaciones de Hemofilia de California los invitan a participar en la Carrera de La Costa de Hemofilia! Agosto 15th-21st La carrera de 674-millas empieza en San Francisco baja a la Carretera 1-1 a través de las ciudades como Santa Cruz, Big Sur, Monterey, San Simeon, Pismo Beach, Santa Barbara, Malibu, San Clemente y termina en San Diego en el Picnic anual de HASDC. ¡No se pierda esta semana espectacular de vista fabulosas y una enérgica carrera de bicicleta!

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Por Favor de Comunicarse con Natalie Simons al (323) 525.0440 o [email protected] si esta interesado en participar y aprender mas sobre los niveles de recolección de fondos. ¡Pero apúrese! La fecha para registro temprano es abril 29 y hay espacios limitados.

Hemophilia Home Care Professional representatives working side by side to help ensure that every aspect of our customer’s care is given attention. Representantes profesionales trabajando de acuerdo para asengurar que cada aspect del cliente sea atendido. hugo estrada area manager 866 416-2263

corporate office 800 935 5211

support w. foothill pkwy suite 105, #87 corona ca 92882

address 160

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HemophiliAction

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2009/2010 Calendar of Events April 11-12 Region IX HTC Conference 2010, Sacramento, CA April 17 World Hemophilia Day Von Willebrand Educational Event and Mother/Daughter Tea Party at American Girl Place, Los Angeles April 23-24 HFA Annual Educational Symposium, Kansas City, MO May 8 Santa Barbara/Ventura Regional Event & Walk Kick Off May 10-12 Future Leaders Day, Sacramento, CA May 12 Legislative Day, Sacramento, CA May 22 Los Angeles Regional Event, TEEN Focus June 7 Golf & Tennis Tournament, Braemar Country Club, Thousands Oaks August 6-11 Camp Blood Brothers and Sisters, Lake Hughes, CA September 10-12 Family Retreat, Malibu, CA October 9th Southern CA Hemophilia Walk November 11-13 NHF Convention, New Orleans, LA *Dates & locations are subject to change www.hemosocal.org Telephone: (323) 525-0440 Fax: (323) 525-0445

Calendario de eventos 2009/2010 Abril 11-12 Conferencia de Región IX HTC 2010, Sacramento, CA Abril 17 Día Mundial de Hemofilia Día Educacional de Von Willebrand Fiesta de Te de Madres e Hijas en American Girl Place, Los Angeles Abril 23-24 Conferencia Anual de HFA, Kansas City, MO Mayo 8 Evento Regional de Santa Barbara/Ventura & Información de Caminata Mayo 10-12 Día de Lideres del Futuro, Sacramento, CA Mayo 12 Día Legislativo, Sacramento, CA Mayo 22 Evento Regional en Los Angeles, Enfoque en Jóvenes Junio 7 Torneo de Golf & Tenis, Braemar Country Club, Thousands Oaks Agosto 6-11 Campamento Blood Brothers and Sisters, Lake Hughes, CA Septiembre 10-12 Retiro Familiar, Malibu, CA Octubre 9th Caminata del Sur de CA Noviembre 11-13 Conferencia de NHF, New Orleans, LA *Fechas y Lugares pueden cambiar . www.hemosocal.org Teléfono: (323) 525-0440 Fax: (323) 525-0445

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LaFern Cusack hosts HFSC youth at ESPN radio station

HemophiliAction

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Hemophilia Foundation of Southern California A Non-Profit Charity Dedicated to Serving the Needs of the Bleeding Disorders Community.

Hemophilia Foundation of Southern California 6720 Melrose Avenue Hollywood, CA 90038 Tel: (323) 525-0440 Fax: (323) 525-0445 [email protected] www.hemosocal.org

Youth Visit ESPN Radio Station

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