Hemophilia Walk: Every Step Makes a Difference

HemophiliAction A publication of the Hemophilia Foundation of Southern California Volume 6 • Issue 3 • Winter 2009 Hemophilia Walk: Every Step Mak...
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HemophiliAction A publication of the Hemophilia Foundation of Southern California

Volume 6 • Issue 3 • Winter 2009

Hemophilia Walk: Every Step Makes a Difference

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, Treasurer Tamara Kato Giovanny Pernudi Doris Quon, MD, Medical Director Alona Metz Secretary

Staff



Linda Corrente, Executive Director Helena Smith, Sr. Office Manager Ivia Daws, Office Manager Natalie Simons, Special Events & Program Assistant Catherine Wang, 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 was delighted to participate in our first Hemophilia Walk held on October 17, 2009 at the Los Angeles Memorial Coliseum. This turned out to be a great event with over seven hundred walkers and raised more than $90,000 with the participation of 50 teams and our sponsors. It was truly inspirational to see Ellis Sulser, our walk chair lead the walk while in a wheelchair and see others who participated using their crutches make their way around the coliseum. It made me very proud to be a part of this community which came together with the spirit and camaraderie I had not witnessed previously. Our board of directors has agreed that this event was a huge success and has decided to continue with it next year. Much of the success was owed to our great staff including Linda Corrente, Helena Smith and Natalie Simons. I just returned from the National Hemophilia Foundation (NHF) National Meeting along with many others from our community. The educational sessions were awesome and with a wide range of topics. They ranged from scientific for providers to group sessions on how best to deal with hemophilia at various



Dr. Richard Metz

stages of life and to advocacy sessions with an emphasis on insurance and insurance reform. In particular, I was very impressed that our major advocacy issues in our community, such as eliminating lifetime

Reporte del Presidente Estaba encantado de participar en nuestra primera caminata de Hemofilia hecha en Octubre 17, 2009 en el Coliseo de Los Angeles. Salió siendo un gran evento con setecientos caminantes y el cual recolectó más de $90,000 con la participación de 50 equipos y sus patrocinadores. Fue verdaderamente una inspiración de ver a Ellis Sulser, nuestro líder de la caminata mientras estaba en su silla de ruedas y de ver a otros que participaron en muletas mientras pasaban alrededor del coliseo. Me hizo muy orgullosos de ser parte de esta comunidad la cual se unió en este día con el espíritu y compañía el cual no había visto antes. Nuestra Junta de Directiva esta de acuerdo de que este evento fue un gran éxito y ha decidido de continuarlo el próximo año. La mayoría del éxito es se los debemos a nuestras empleados incluyendo a Linda Corrente, Helena Smith y Natalie

Simons. Acabé de regresar de la Reunión Anual de la Fundación Nacional de Hemofilia (NHF) con muchos de nuestra comunidad. Las sesiones educacionales fueron fantásticas con una variedad de temas. Iván desde temas científicos para proveedores a sesiones de grupos de cómo manejar las diferentes etapas de hemofilia y sesiones de advocación con un énfasis en seguros y reforma de seguros. En particular, estaba muy impresionado que nuestros asuntos de advocación en la comunidad, tales como eliminar la exclusión de límites y condiciones pre-existentes. Estos mejoramientos llegaran pronto y se convertirán una realidad si pasa la reforma de salud propuesta en legislación. Le debemos unas gracias por la cooperación de muchas de la organizaciones incluyendo

caps and preexisting condition exclusions. These major improvements are about to become reality if the current proposed health reform legislation passes. We owe a great deal of thanks to the cooperation of many of our organizations, including NHF, HFA, COTT, and a coalition of other chronic disease states to pushing through these issues. We all need to remember, however, to keep the pressure on our congressmen and senators until a bill for both houses is actually passed. I encourage all of you to call or email your representatives. On the local front, our holiday parties are just around the corner and I hope to see you all there. I want to wish you all a very happy holiday season and let us start the New Year in 2010 with the same spirit and cooperation that we were able to demonstrate at our Walk. Happy Holidays, Richard J. Metz, M.D. Hemophilia Foundation Southern California

Dr. Metz and his wife Jane in Halloween costumes for the NHFconvention Final night gala.

a NHF, HFA, COTT y la coalición de enfermedades crónicas por empujar estos temas. Todos debemos recordar, sin embargo de mantener presionando a nuestros lideres de congreso y senadores hasta que la ley actualmente pase. Los animo a todos a que llamen o le manden un correo electrónico a sus representantes. En noticias locales, nuestras fiestas navideñas están muy cerca y espero verlos a todos allí. Les quiero desear unos días festivos muy felices y empecemos un Año nuevo 2010 con el mismo espíritu y cooperación que pudimos demostrar en nuestra caminata. Feliz Navidad, Richard J. Metz, M.D. HemophiliAction

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Executively Speaking 2009 In Review Dear Southern California Friends, Wow!! It has been an amazing year that fills me with so much joy and admiration for all of you. As we faced the hardest economic times, we came together and become a united community. The Foundation continues to be in a good position to support the bleeding disorders community thanks to many individuals and groups with big hearts. Home is where the heart is, and I hope that you will continue to consider the Foundation your home. This year, it was great to see record numbers at our Foundation programs and events. We started the year with a grand attendance of 500 at the fabulous Queen Mary as we celebrated the Foundation’s 55th Anniversary & Family Information Day. We ventured out of Los Angeles County to host our regional meetings in Orange, Santa Barbara, and Riverside counties. I also played my first game of laser tag at our youth event. We hosted 87 campers

2009 En Repaso Apreciados Amigos del Sur de California, ¡¡Wow!! Ha sido un gran año que me llena de tanta felicidad y admiración por todos ustedes. Mientras nos enfrentamos en los tiempos económicos más difíciles, no unimos como una comunidad. La Fundación continua estando en buena posición para apoyar a la comunidad con enfermedades sanguíneas gracias a muchos de los individuos y grupos con grandes corazones. El hogar es donde esta el corazón, y espero que sigan considerando a la Fundación como su hogar Este año es fantástico ver participación en nuestros programas y eventos. Empezamos este año con una gran participación de 500 personas en el fabuloso Queen Mary mientras celebremos el Aniversario 55 del Día de Información familiar. Nos aventuramos al Condado de Los Angeles a ser anfitriones de reuniones regionales en Orange, Santa Barbara y el condado de Riverside. También jugué mi primer juego de laser tag en nuestro evento de jóvenes. Fuimos anfitriones de 87 campistas en el Campamento Blood Brothers and Sisters, con unas

at Camp Blood Brothers and Sisters, with a special thanks to our largest camp donor, the Mark Leone Camp Fund. Special moments to treasure are the friendships with Catherine Leone and her husband Keith Lehmann and Catherine’s parents, Aida and Philip Leone. Catherine spoke at our Walk kickoff event in memory of her brother Mark, which inspired many there to support our cause. It was an honor to attend the Committee on Ten Thousand 20th Anniversary celebration and provide a loving memorial in a photo chain to those who lost their lives to HIV. The photos were displayed at the banquet, which later were placed at the Washington DC mall. I couldn’t believe I would enjoy walking as much as I did at our own first Hemophilia Walk in Southern California. It was the best day seeing all of you and the spirit you brought to the Walk and to the community in general.

gracias especiales al donante mas grande, Mark Leone Camp Fund. Un momento especial para atesorar la Amistad con Catherine Leone y su esposo Keith Lehman y los padres de Catherine, Aida y Philip Leone. Catherine habló en nuestro evento para presentar la Caminata en conmemoración de su hermano Mark, quien inspiró a muchos de nosotros para ayudar la causa. Fue un honor en participar el Comité de Diezmil en su celebración del aniversario 20 y proveer una conmemoración amorosa y una cadena de fotos de aquellos fallecidos por VIH. Las fotos fueron mostradas en el banquete el cual fue después puesto de Washington DC No puedo creer que disfrutaría caminar tanto como lo disfruté en nuestra primera caminata de Hemofilia en el Sur de California. Fue el mejor día para ver a todos ustedes en el espíritu que trajeron a la Caminata y a la comunidad en general. . Fue algo especial ver a Gerry Green, una de nuestras miembros que nos fundó en la caminata como miembro del equipo, una voluntaria y padre en

It was especially heartfelt to see Gerry Green, one of our founding members at the walk as a team member, a volunteer and a parent in memory of her sons, Bob, Nick and Phil. A great group of people came to the walk with family and friends some on crutches and wheel chairs. It has been my pleasure and honor to know everyone of you and to be a part of the team. Because of your great spirit I was asked to be a speaker at the National Hemophilia Walk training. Corey Parker and I were interviewed on ESPN and Disney radio. You can listen to our interview at hemophilia.org/walk on the Southern California Walk web page. A special thanks to our Foundation Board President Dr. Metz and the board members for all their work and their100% participation in fundraising. We will end this year with wishing you all the happiest of holidays and planning for an eventful 2010. Happy Holidays, and the best for you and yours for the New Year. Linda Corrente Executive Director

conmemoración de sus hijos Bob, Nick y Phil. Un gran grupo de personas que vinieron a caminar con sus familias y amigos algunos en muletas y sillas de ruedas. Ha sido un placer tener el honor de conocer a todos ustedes y de ser parte del equipo. Por su gran espíritu fui escogida para hablar en el entrenamiento de Caminatas de la Fundación Nacional de Hemofilia. Corey Parker y Yo fuimos entrevistados por ESPN y Disney Radio. Usted puede escuchar la entrevista en hemophilia.org/walk en e lugar de la red de la Caminata del Sur de California Unas gracias especiales al Presidente de la Fundación el Dr. Metz y a los miembros de la Junta Directiva por su gran trabajo y su 100% de participación en recolectar fondos. Terminaremos este año deseándoles unos Felices Días festivos y planeando eventos para el 2010. Felicidades y les deseo lo mejor para usted y los suyos para el Año Nuevo. Linda Corrente Directora eejcutiva.

Welcome New Staff Member, Ivia Daws Ivia Daws is the newest staff addition member, sharing the responsibilities of our office management with Helena Smith. Ivia was born in Brazil, but lived most of her adult life in Stockholm, Sweden. While there, she attended Stockholm University and earned her Masters degree in Business Administration. Her studies allowed her to travel to Southern Spain, where she improved one of the four languages that she fluently speaks. Ivia has enjoyed her travels abroad, exploring new cultures and meeting new people. She is now excited and eager to meet everyone in the Foundation community and bring all of her experience and talents to champion our efforts here.

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Tenemos el placer de presentar a Ivia Daws, nuestra empleada mas nueva. Ella compartirá las responsabilidades de nuestra oficina con Helena Smith. Aunque nació en Brazil, Ivia vivió mayor parte de su vida adulta en Stockholm, Sweden atendiendo a Stockholm University y obteniendo su grado de Masters en Administración de Negocios. Sus estudios permitieron que viajara al Sur de España, donde mejoró en cuatro lenguajes los cuales habla con soltura. Ivia ha disfrutado de sus viajes al extranjero, explorando nuevas culturas y conociendo a nuevas personas. Ahora esta dispuesta a conocer a todos en la comunidad de la Fundación y a traer toda su experiencia y talento para abanderar sus esfuerzos aquí.

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              



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                           HemophiliAction 5    

Every Step Makes A Difference Hemophilia Walk 2009 The Hemophilia Foundation of Southern California held our First Annual Southern California Hemophilia Walk on Saturday, October 17 at the majestic Los Angeles Memorial Coliseum. With 778 participants in attendance it was an event to remember! The walk has raised over $90,000 (and counting!) for our foundation and National Hemophilia Foundation. This could not have been done without the support of all of our participants, donors and sponsors. Our Walk Chair, Ellis Sulser deserves recognition, not only for being an outstanding and inspirational Walk Chair, but also for participating in the walk only weeks after undergoing surgery. Elllis’ perseverance serves as a reminder to all of us that we can never stop raising awareness or working towards a cure. A special thank you also goes out to our Board President, Dr. Richard Metz, and his Ninja Star Team, whose enthusiasm for the walk and team spirit was awesome! Our walkers braved the heat and got to enjoy food, music, activities and, of course, walking! We were treated to two great performances by live bands. The Peppershrikes, with lead singer Kaylee Score whose family is also a part of the hemophilia community and Love and Hate with lead singer Elisamarie Cabrera and her sister Crystal Cabrera. When it was time to walk, everyone was lead in some pre-walk stretches by Aaron Mitchell, owner of Extreme Boot Camp. Whether they were running, walking, in a wheelchair, or on crutches all of the walkers represented the amazing heart of our community. Linda Corrente, HFSC Executive Director cheered all the walkers as they paraded around the Olympic circle when their team name was read. Then the walk began with a special entrance into the Los Angles Memorial Coliseum, site of the 1984 Olympic games. After walking a total of three miles, everyone was rewarded with a medal and refreshing ice cream, thanks to our National Presenting Sponsor, Baxter. Post

walk activities included the Best Buy tent with Wii game systems, face painting and balloon art and a crafts table with our friends from Camp Painted Turtle and chair massages from Shaynese Bowie of Relax, It’s Just Massage. We would also like to recognize all of our award winners. Our top community fundraising team was Team Santa Barbara. Team captain Melissa Franzen, as well as all of her team members, were able to raise over $5,500! Our top individual fundraiser, Michael Franzen, also came from Team Santa Barbara. Great Job! National sponsor Baxter pulled together all of their local employees from their plants and won the title of top fundraising industry team, raising over $11,000! The most creative team T-shirt/outfit was a tough category, but after some heated debate among our judges team captain Karlyn Johnson Brown and her team, A Little Brown Baby won first place. Honorable mention was awarded to J Team representing Jasim Pabon. The Team Spirit award was exuberantly accepted by Team Xtreme and the Nuno Family with The Ninja Stars coming in at a close second. Great job to all of our walk teams! It was so wonderful to see the results of all of our hard work and especially gratifying to see all of our walk teams with their spirit and creative T-shirts! Friends, family members and others all came out to support a cause that is close to all of our hearts. Not only did we meet our fundraising goal, but we also were able to meet the goal of spreading awareness of bleeding disorders throughout Southern California. A special thank you also to all of our national and local sponsors who joined us in making our walk a special event for all of us. Thank You!!

Cada Paso Hace una Gran Diferencia Caminata 2009 La Fundación de Hemofilia del Sur de California fue anfitrión de la Primera Caminata Anual del Sur de California en sábado octubre 17, en el majestuoso Coliseo de Los Angeles. Con 778 participantes, ¡fue un evento para recordar! La camina recolectó mas de $90,000 (¡y contando!) para nuestra Fundación. Esto no se pudo haber hecho sin la ayuda de todos los participantes, donantes, y patrocinadores. El líder de nuestra caminata Ellis Sulser se merece un reconocimiento especial , no solo por ser un líder sobresaliente e inspirante, pero también por participar en la caminata después de tener cirugía hace solo unas semanas. La perseverancia de Ellis sirve como un recordatorio a todos nosotros de que nunca debemos parar de proveer información sobre la cura para hemofilia. Un agradecimiento especial para nuestro Presidente de la Junta Directiva, el Dr. Richard Metz y su Grupo de Ninja Star quienes tuvieron un fantástico entusiasmo por la caminata! Nuestros caminantes fueron valientes por el calor y disfrutaron de comida, música, actividades y ¡claro de caminar! Tuvimos el placer de escuchar a dos bandas musicales. Los Peppershrikes con cantante líder Kaylee Score de la cual su familia es también parte de la comunidad hemofílica y Love and Hate con cantante Elisamarie Cabrera y su hermana Crystal Cabrera. Cuando fue hora de caminar, todos hicieron ejercicios de estiramiento con líder Aaron Mitchell, dueño de Extreme Boot Camp. Ya sea que estuvieran caminando, corriendo, en silla de ruedas, o en muletas todos los caminantes representaron un gran amor por nuestra comunidad. Linda Corrente, HFSC Directora Ejecutiva animó a todos los caminantes mientras pasaban alrededor de l circulo Olímpico mientras se llamaban todos los nombres de los equipos, y empezaban a caminar hacia la entrada especial dentro del Coliseo de Los Angeles el lugar de los juegos Olímpicos de 1984. Después de caminar un total de tres millas, todos recibieron una medalla y helado muy necesitado, gracias a Nuestro Patrocina-

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dor Nacional Baxter. Actividades después de la Caminata Incluyeron la Carpa de Best Buy con Juegos Wii, pintura de caras, y arte de globos, con amigos de Painted Turtle y masajes de Shaynese Bowie de Relax, It’s Just Massage. Queremos reconocer a todos los ganadores de premios. El equipo que recogió mas fondos fue el Grupo Santa Barbara. El capitán del equipo es Melissa Franzen y todos los miembros de su grupo ¡que pudieron recolectar $5,500! Nuestro individuo que recogió mas fondos fue Michael Franzen, que también viene del equipo Santa Barbara, ¡Gran trabajo! El patrocinador Nacional Baxter, reunió a todos los empleados de las plantas locales y ganaron el titulo del mejor equipo en recoger fondos de la industria ¡recolectando mas de $11,000! El grupo con la ropa/camiseta mas creativa fue algo difícil pero después de discutirlo los jueces decidieron que Karlyn Johnson Brown y su equipo llamado A Little Brown Baby came out on top ganaron. Menciono honorable fue a J Team representando a Jasmin Pabon. El premio al grupo con mejor espíritu fue a Xtreme y la familia Nuno con Ninja Stars llegando a un cercano segundo. ¡Gran trabajo por todos los equipos! Fue fantástico ver todo el trabajo y fue especialmente gratificante ver a todos nuestros caminantes en su espíritu y camisetas creadas. Amigos, miembros de familia y otros llegaron para apoyar esta causa que esta tan cerca de nuestros corazones. No solo llegamos a la meta de recolección de fondos, pero también pudimos realizar la meta de informar sobre enfermedades sanguíneas a través del Sur de California. Un agradecimiento especial a nuestros patrocinadores nacionales y locales que participaron en hacer la caminata un evento especial para todos. ¡ Gracias!!

Walk Kick Off Event

Walk Day At the LA Memorial Coliseum

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Thank You 2009 Walk Teams & Team Captains! We Have Hope, Cindy Morales Tuesday, Belgium, Kristin Hokoyama The High Desert Turtles, Betsy Cook Termin”8”ors, Jenny Nerenberg Team Xtreme, Joshua Nuno Team Shimasaki, Leslie Shimasaki Team Santa Barbara, Melissa Franzen Team Ryan Santos, Elizabeth Santos Team Rubi, Jessica Cooper Team Pernudi, Giovanny Pernudi Team Miguel, Irene Maldanado Team Jake the Snake, Jessica McDonald Team Isaac, Eric Macias Team Hemophilia Health Services, Antonio Rosas Team Grifols, Bernard Glynn Team Gregge, Lawrence Gregge, Sr. Team ELLIS, Linda Leigh Sulser Team Cure, Karl Score Team Biomed, Wagner Lemus Smita Barua, Smita Barua Reign-in-Blood, Miguel Diaz R C C rel(8), Regan Ostroot Premiere Hemophilia Care, Nicole Wruck Perez Pedestrians, Miguel Perez Novo Nordisk, Dan Goodwin

Ninja Stars, Richard Metz Linda’s Party Walkers, Linda Corrente Blood Brothers Hemo Walkers, Linda Reyes LA Orthopaedic HTC Jumping Monkeys JDJ, Marisol Medina Jarett’s Joggers, Cherie Guillow Jackson Corral, Jose Corral J Team, Maryann Pabon D and A, Raudel Perez CSL Behring, Corey Parker Coram Hemophilia Services, Shirley Bozigian Comfort Keepers, Tamara Kato Central Valley Hemophilia Kids, Candice Clifford Caremark Walkers to the Rescue, Reina Castaneda Brothers Healthcare, Scott Carthey Blood Runners, Adrienne Castro Bayer Cruisers for Bruisers, Karen Arrieta Baxter Westlake, Yassi Strouse Baxter Western Warriors, Clem Adkins Baxter LA, Stepping for the Cure, Gus Hernandez Baxter BioScience Thousand Oaks Plant, Rudy Hildago Acme Service Crew, Judy Brannan A Little Brown Baby, Karlyn Johnson-Brown #1 Fundraising, Team Santa Barbara

Thank You Southern California Hemophilia Walk Sponsors Thank You Volunteers National Sponsors: Baxter Bayer Wyeth Talecris Local Sponsors: Platinum Sponsor Novo Nordisk Gold Sponsors Grifols, NasalCease & CSL Behring Silver Sponsor Accredo Bronze Sponsors Acme Healthcare Factor Support Network Orthopaedic HTC Walk Supporters Brothers Healthcare CVS Caremark City of Hope OSO Home Care Kilometer Sponsors CHOC CHLA Linda and Frank Corrente Larry Methvin Installation, Inc

Gina Ruan Jesse Ruan Lisa Pullens Paula Urquidi Amy Britton Gerry Green Sochi Frank Carol Smallwood Daniel Jordon Gabby Griffin Gabriella Mora Jeanette Chavaria Maryann Pabon & Family Arielle Haylock Renee Lopez Maria Castillo Gaudalupe Mota Paulina Lopez Leonard Lopez Ramelle Dorsett Antonio Rosas Wagner Lemus Karen Arrieta David Paup Corey Parker Randy DeSantis Reina Cataneda Linda Reyes Judy Brannan

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HFSC Community Corner It has been a busy summer and fall with community events. We had record attendance at the first annual Southern California Hemophilia Walk at the Los Angeles Memorial coliseum, a hemophilia youth event in August and two regional community events in September. All of our 90 campers and counselors had a great time at Camp Blood Brothers and Sisters, and we wanted to continue that spirit throughout the summer. This August we hosted a youth event for our Los Angeles area members at UltraZone Laser Tag in Sherman Oaks. A great time was had by all as everyone played two games of laser tag and enjoy pizza and soda. Any lingering shyness was forgotten once everyone entered the Laser tag arena and battled it out for their teams! Board Member, Giovanny Pernudi was on hand to make sure that everyone had fun as well as former camp counselor, Arthur Coleman. Thanks Giovanny and Arthur! We got to see many of our families from the Inland Empire at our Dave & Buster’s Inland Empire Regional Meeting on September 12. The families who attended were treated to some great food and free game cards . Local walk manager Natalie was on hand to energize everyone for the Southern California Hemophilia walk, and many of the families who attended the meeting went on to form walk teams with their family and friends. It was great chance for everyone to be

able to get together and talk with other hemophilia families in their area. Special thanks go out to Betsy Cook for her help in coordinating this event! On September 20th we held a regional meeting for our Ventura County and Santa Barbara County community members. Board member, Melissa Franzen organized a wonderful outing that was enjoyed by kids and parents alike. We were treated to a land and sea tour on the Landshark, a one of a kind boat that goes straight from the land to the water. Everyone learned a little something about Santa Barbara’s unique history from the boat captain and had a great time in the process. A highlight for everyone was seeing a group of sea lions as they slept on a buoy! Afterwards, everyone enjoyed pizza from Rusty’s and some delicious walk logo cookies decorated by Melissa. All three of these regional events were not only part of a fun and eventful summer here at HFSC, but they also allowed many of our families to get together and network in a relaxed atmosphere. We look forward to seeing you all again soon!

HFSC Esquina de la Comunidad Ha sido un verano y un otoño muy ocupado aquí en la Fundación. Junto con la caminata fuimos anfitriones de un evento para los Jóvenes con Hemofilia en agosto y dos eventos comunitarios en septiembre. Ya que todos pasan tan bien en el campamento queremos continuar el espíritu a través del verano. Este agosto fuimos anfitriones de un evento para jóvenes del área de Los Angeles en el UltraZone Laser Tag en Sherman Oaks. Pasaron muy bien todos los que jugaron dos juegos de laser tag y disfrutaron de pizza y soda. Cualquier pena se olvido para aquellos que entraban el área de laser tag. Todos pasaron muy bien en la guerra en sus respectivos equipos. Miembro de la Junta Giovanny Pernudi estaba disponible para asegurarse de que todos pasaron bien, ¡Gracias a Giovanny!. Pudimos ver a muchas de nuestras familias del Inland Empire en nuestra Reunión regional en el Inland Empire septiembre 12. Pudimos disfrutar una gran comida y juegos gratis proveídos por Dave & Busters. Manejadora de la caminata local Natalie estaba disponible para darle energía a todos en la Caminata de Hemofilia del Sur de California y muchas familias quienes participaron en la reunión formaron grupos para la caminata y participaron con sus familias y amigos. Fue una gran oportunidad para que todos se reunieran y hablaran con otros familias en el área. ¡Unas gracias especiales a Betsy Cook por su ayuda en coordinar este evento! Septiembre 20 tuvímos una reunión regional en Ventura y Santa Barbara con miembros de la Comunidad. Melissa Franzen miem-

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bro de la Junta organizó una gran salida que fue disfrutada por niños y padres. Pudimos disfrutar de un paseo de tierra y mar en Landshark, un bote que sale derecho de la tierra al agua. Todos aprendieron un poco sobre Santa Barbara y su historia gracias al capitán del bote y nos divertimos en el proceso. Lo mejor para todos fue el ver un grupo de leones marinos cerca mientras dormían. Después todos disfrutaron de pizza de Rusty’s y unas deliciosas galletas decoradas por Melissa. Los tres eventos regionales fueron muy divertidos, y permitieron que nuestras familias se reunieran y hablaran y en un ambiente relajado. ¡Esperamos verlos a todos pronto!

Community Events

Trust the Experience At CVS Caremark, we’ve been helping families like yours for over 30 years. And as one of the nation’s leading hemophilia service providers, we understand the challenges of living with hemophilia. We provide you with a personal CareTeam of dedicated and experienced pharmacists, nurses and customer representatives. Our proactive, caring patient support helps ensure safety, assay management and education.

Marilyn August, MSW 1-800-980-1788 Reina Castaneda 1-877-718-8724

www.caremark.com

©2009 Caremark. All rights reserved.

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Community Resources Employment Placement/Job Training: Center for Living and Learning | (818) 781-6218, (888) 266-1919 14549 Archwood St., Ste. 202, Van Nuys, CA 91405 www.Center4Living.org | [email protected] Center for Living and Learning | (818) 781-6218, (888) 266-1919 A non-profit that provides a variety of services including access to computers, phones, and fax machines; and assistance in finding employment through resume writing, referrals, and preparation courses. This is a free service. Women at Work www.womenatwork1.org Pasadena, CA (626) 796-6870 Serving the greater Los Angeles area, Women at Work is a nonprofit job and career research center committed to helping women reach their full potential. Insurance/Medical: L.A. Care Health Plan | (888) 452-5437 and (213) 694-1250 555 W. 5th Street, Los Angeles, CA www.lacare.org L.A. Care offers low-cost and free health, dental and vision coverage for children in L.A. County. We serve nearly 800,000 members in the Medi-Cal, Healthy Kids and Healthy Families Programs. L.A. Care helps families in L.A. County obtain health coverage from providers in their neighborhoods who speak their language. Inland Empire Health Plan | (800) 440-4347 and (866) 294-4347 303 E. Vanderbilt Way San Bernardino, CA 92408 Provides affordable health care to low-income families. Find out if your child qualifies for Medi-Cal or Healthy Families Program. Coverage includes doctor and hospital visits, vision, prescriptions and immunizations. Legal Services: Bleeding Disorders Legal Hotline: 1-800-520-6154 Legal assistance in many areas, including: obtaining and maintainging private health insurance, information on Medicade and Medicare, Insurance inssues related to transitioning young adults, and many more. Endorsed by the National Hemophilia Foundation. Neighborhood Legal Services of Los Angeles County

EL MONTE 9354 Telstar Avenue El Monte, CA 91731 GLENDALE 1104 E. Chevy Chase Drive Glendale, CA 91205 Contact #: Legal Assistance : 800-433-6251 Health Consumer Center : 800-896-3203 Self help centers are also available. Please call or go to http://www.nls-la. org/contact.php Legal Aid Society of Orange County 800 834-5001 or 714 571-5200 http://www.lasoc.com/ Providing free civil legal services in a variety of areas, including a hotline, self-help clinics, and online forums. Housing: LA County Housing Resource Center 1.877.428.8844 http://housing.lacounty.gov/index.html Assisting all Residents in Locating Housing Resources for Affordable, Special Needs and Emergency Housing Other: MEND 10641 N. San Fernando Rd. Pacoima, CA 91331 (818) 897-2443 (818) 897-0128 (fax) Helping families with food, clothing, and medical needs in the Pacoima, San Fernando, Lake View Terrace, Mission Hills, and North Hills areas. Mend also offers referral services for families not in their immediate area.

Program Offices: PACOIMA 13327 Van Nuys Boulevard Pacoima, CA 91331

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Youth in the News, Tanner Score Cross Country Anyone? Karl Score sent in a picture from the local press of his son, Tanner Score, who is on the boys cross country team. He wants other adolescents as well as their parents to know that boys with hemophilia can lead full and active lives, like playing higher impact sports like cross country. “I always try to encourage parents to learn all they can about hemophilia, learn to home infuse so that their kids can have a normal life,” Says Karl. “Hemophilia does not run our life, it is just a small part of our life.” He tells them, “If you could do something for your child that takes 10 minutes 3 times a week so that they can have a normal life would you do it? Of course you would. I try to get them to look at it as a trade off… 10 minutes 3 times a week and your child gets to live an pretty normal life, learn to infuse and just do it! We have products today that would be considered miracles 40 years ago and there are some in the community who don’t take advantage of the miracles available to us. “ Karl is the father of a teenager with severe Hemophilia. ¿Alguien interesado en A campo Traviesa? Karl Score sent in a picture from the local press of his son, Tanner Karl Score envió una foto del periódico local de su hijo Tanner Score, quien esta en el equipo de jóvenes en A campo traviesa. El quiere que otros adolescentes y también sus padres sepan que jóvenes con hemofilia pueden tener vidas llenas y activas, como jugar deportes tales como A campo traviesa. “Yo siempre trato de animar a padres a que aprendan lo que mas puedan sobre hemofilia., que aprendan a hacer la infusión en casa y así puedan tener vidas

normales,” dice Karl. “La hemofilia no tiene que ser todo en su vida, es solo una parte pequeña de su vida.” Les dice a ellos. “ Si usted puede hacer algo por su hijo que toma 10 minutos tres veces a la semana para que ellos tengan una vida normal ¿no lo haría? Claro que si. Yo lo vería como algo muy positivo 10 minutos tres veces a la semana y ellos pueden tener una vida normal, aprendan a hacer la infusión y solo¡ hágalo! Tenemos los productos hoy que se considerarían milagros hace 40 años y hay algunos en la comunidad que no toman ventaja de estos milagros disponibles para nosotros. Karl es el padre de un joven con hemofilia severa.

Scholarship Winners Scholarship Winner Lawrence Gregge Jr. When I think about what I want to do in life I always seem to look at those around me who had the same questions about careers that I have. I see the people close to me go about their everyday lives and I conclude that I am surrounded by two types of people, those who enjoy what they do and those who do not. Obviously those who appreciate what they do in life enjoy waking up to go to work and enjoy being there, those who do not wonder how they got their in the first place and how much it seemed to be a good idea in the beginning. Once I complete my education at Cal State Fresno, I plan on becoming a physical therapist and when the years seem to be going by slower and slower and I may even begin to get tired of what I do, I will always be helping people. I want to help young athletes the same age as I am

now become the very best they can be. To not have them constantly reminded of their own limitations and what they should and shouldn’t do as I experienced like in my four years of track and cross-country. With the belief and faith of my family behind me I defied what anyone thought I could do, doctors and coaches included. To be a physical therapist and furthering the training of mind and body will be my occupational goal. My objectives will be not only to heal but to teach the young athletes why it’s not foolish to have big dreams as long as one has a strong enough will and determination to make it happen. When I have children who may one day become athletes, this is the same mind state that I will teach them, and hopefully they will listen.

Ganador de la Beca Lawrence Gregge Jr. Cuando pienso que quiero hacer en mi vida siempre parece que veo a aquellos alrededor de mi quienes tenían las misas preguntas sobre carreras como Yo. Veo a aquellos cercanos a mi seguir sus vida y concluyo que estoy rodeado de dos tipos de personas , aquellos que disfrutan lo que hacen aquellos que no lo disfrutan. Obviamente los que aprecian lo que hacen disfrutan despertarse todos los días e irse a trabajar y estar ahí, los que no, se preguntan como llegaron a ese punto en primer lugar y como parecía ser una buena idea al principio. Ya que complete mi educación en Cal State Fresno planeo en ser una terapeuta físico y aunque los años pasen y parezca que pasen mas y mas despacio empiece a cansarme de los que haga, siempre estaré ayudando a las personas, y atletas jóvenes de mi edad

Scholarship Winner Yanko Roman My name is Yanko Roman and I have Hemophilia B severe. My condition never had become a barrier between me and my future. I just graduated from UEI College as a Computer System Technician and selected as valedictorian of 2009. Today, I am starting my career and realized that nothing in life is easy when you have hemophilia. if you see inside of your heart you will find the strongest force to succeed that nobody has seen before.

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a convertirse en lo mejor que puedan y a no estar constantemente recordando sus limitaciones y lo que deben y no deben hacer como cuando era corredor por cuatro años. Con la creencia y fe de mi familia yo desafié lo que alguien pensó que podía hacer, incluyendo a doctores y entrenadores. Para ser un terapeuta físico, mejorar el entrenamiento de la mente y cuerpo será mi meta ocupacional y mis objetivos será de no sanar pero enseñarles a atletas jóvenes por que seria tonto no tener sueños grandes con tal de que uno tenga una determinación suficiente para hacerlo. Cuando tenga hijos que algún día se conviertan en atletas, esta es la misma mentalidad que les enseñaré y ojala ellos escuchen.

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When you need us, Baxter will be there. Through Therapies Providing innovative recombinant factor, plasmaderived, and inhibitor management therapies highlights our commitment to choice and illuminates our investment in research and development.

Through Participation In listening to your request for education programs, we’ve developed a range of initiatives for patients, families, physicians, and nurses. Baxter is also committed to supporting local and national organizations, community events, and volunteering.

Through Progress Looking to the future, Baxter is dedicated to improving current therapies. We will continue to invest in research to offer new and better ways to manage hemophilia A—innovations inspired by listening to you.

H EMOPHILIA THERAPIE S

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Factor VIII & Inhibitor Management Therapies

Resource Programs for Hemophilia Care & Challenges

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Assistance, Support, & Information

Support of Medical Education & Clinical Training Programs

Facts First, Camp SuperFly, Knights’ Crossing, Careers, Education, & Opportunities (CEO), and more

Factor Assist, grants for advocacy training and advocacy projects, and a toll-free assistance hotline 1-888-BAXTER9

Funding training for new hematologists and educational programs for nurses and healthcare partners

A broad portfolio of recombinant factor, plasma-derived, and inhibitor management therapies provides more options for more people

Venous Access, Home and Self-Infusion Kits, Advoy, and www.thereforyou.com

For more information on Baxter programs and services, visit www.thereforyou.com.

There when you need us

Baxter, Advoy, Camp SuperFly, Factor Assist, and www.thereforyou.com are trademarks of Baxter International Inc. ©Copyright (January 2007), Baxter Healthcare Corporation. All rights reserved. HYL2652

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Research Articles Company Reports on vCJD Blood Test at WFH Forum in Montreal

Australian Boys with Bleeding Disorders Perform Well in Fitness Tests

A company specializing in diagnostics and therapies for brain wasting diseases such as Alzheimer’s disease and Parkinson’s disease recently presented its new blood screening test for variant CreutzfeldtJakob Disease (vCJD). The presentation was made at the Sixth World Federation of Hemophilia (WFH) Global Forum on the Safety and Supply of Treatment Products for Bleeding Disorders in Montreal, Canada on September 25, 2009. The test is known as the EP-vCJD™ screening assay.

In a study published in the August issue of Haemophilia, Australian researchers sought to determine how boys with hemophilia and von Willebrand disease (VWD) performed in fitness, strength and quality of life (QoL) tests, compared to their unaffected peers.

vCJD is the human form of “mad cow disease” or bovine spongiform encephalopathy (BSE), which causes a degenerative and ultimately fatal brain disorder. The majority of vCJD cases in humans occurred during an outbreak in the United Kingdom (UK) in the 1990s. Transmission to humans occurred in the 1990s, when people ate beef contaminated with BSE. There have been 167 confirmed cases of vCJD in the UK; all have died. There is currently no diagnostic test for vCJD and diagnosis can only officially be verified via a post-mortem brain matter analysis. “Early this year, the UK Health Protection Agency confirmed the first case of vCJD in one of the thousands of hemophiliac patients who received potentially contaminated plasma fractions. While the patient ultimately died of causes other than vCJD, this news has served to amplify the calls from hemophilia patients in the UK and around the world for their respective governments to protect the blood supply through routine testing of blood donations,” said Dr. George Adams, Chief Executive Officer of Amorfix Life Sciences Ltd, the manufacturer of the test. “Universal testing would provide peace of mind for hemophiliacs and their families and identify anyone already incubating vCJD so counseling could be provided to potential victims.” Adams also reported on the test’s efficacy. “As previously reported, a total of 30,000 blood donations have been collected and tested with our EP-vCJD™ screening assay at two blood transfusion centers in France,” he said. “In both centers using two lots of test kits, the EPvCJD™ screening test performed better than the 99.85% specificity required by the UK Blood Transfusion Service and therefore meets the required performance standard for routine testing.” Continued study of EP-vCJD™ will soon expand to three blood centers in France. There are also plans to test the screening assay in blood centers in other countries. Source: Amorfix news release dated September 24, 2009

DREAMSKIN SPA.doc

The lead investigator of the study was Dr. Carolyn Broderick, School of Medical Sciences, Faculty of Medicine, University of New South Wales (NSW) in Sydney. Broderick is a staff specialist in Paediatric Sports Medicine, Children’s Hospital at Westmead and the director of sports medicine programs at NSW. Interestingly, Broderick is also the team physician of the Australian Federation Cup Tennis Team and former team physician for the Australian Olympic Team. In all, 44 boys between the ages of 6 and 17 years old participated in the study; 41 had hemophilia A or B, 21 were classified severe, 11 were moderate and 9 were mild. The remaining three boys had VWD. Thirty-one were on prophylactic treatment regimens, while 13 (30%) were receiving on-demand therapy. Measurements for body mass index (BMI) were also taken. The results in both aerobic and strength tests from these children were compared with those of unaffected school children involved in the 2004 NSW Schools Fitness and Physical Activity Survey. Children were also asked to complete the Haemo-QoL, a validated, disease-specific quality of life questionnaire. All children completed an “age-relevant” version of the Haemo-QoL. Total Haemo-QoL scores were calculated for each age-group and then measured against comparable data from four European countries. The results indicated that there were no “statistically significant or clinically important” disparities in aerobic fitness or BMI between the boys with bleeding disorders and the unaffected children in any age category. In fact, boys with hemophilia ages 4, 6 and 10 years old demonstrated greater strength than their peers. The data prompted Broderick and her colleagues to report that the performance of Australian boys with bleeding disorders was on par with the other children. “Australian boys with bleeding disorders do not have impaired aerobic capacity or strength compared with their peers. Quality of life in Australian boys with haemophilia is comparable to their European counterparts,” concluded the authors. The study, “Fitness and Quality of Life in Children with Haemophilia,” was published online August 26, 2009, in the journal Haemophilia.

12/1/09 Dreamskin 10:20 PMspanish.doc

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The first 100 clients to make an appointment will also receive a pink crystal coffee mug filled with aLos primeros 100 clientes que hagan una cita también recibirán un vaso de café cristal Rosado lleno de la microdermabrasion home care cream. crema microdermoabrasión para la casa . Call to make toue appointment and support the Hemophilia Foundation

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2009/2010 Calendar of Events

Calendario de eventos 2009/2010

December 5 December 12 December 19 2010 February 24-28 April 11-12 April 23-24 May 10-12 May 12 June 7 Thousands Oaks August 6-11 September 10-12 November 11-13 TBA

Deciembre 5 Reunión Regional en el Condado de Orange Deciembre 12 Fiesta Navideña en LA 2-4pm Culver City Deciembre 19 Fiesta Navideña en Santa Bárbara (Solo la Comunida) 2010 Febrero 24-28 Días de Washington y Fin de semana de Liderazgo en Washington, DC Abril 11-12 Conferencia de Región IX HTC 2010, Sacramento, CA Abril 23-24 Conferencia Anual de HFA, Kansas City, MO Mayo 10-12 Día de Lideres del Futuro , Sacramento, CA Mayo 12 Día Legislativo, Sacramento, CA 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 Noviembre 11-13 Convención de NHF, New Orleans, LA Fecha será Determinada: Día de Información familiar y Caminata de Hemofilia

Orange County Regional Meeting LA Holiday Party, 2-4pm Culver City Santa Barbara Holiday Party (Community only) Washington Days & Leadership Weekend, Washington, DC Region IX HTC Conference 2010, Sacramento, CA HFA Annual Educational Symposium, Kansas City, MO Future Leaders Day, Sacramento, CA Legislative Day, Sacramento, CA Golf & Tennis Tournament, Braemar Country Club, Camp Blood Brothers and Sisters, Lake Hughes, CA Family Retreat, Malibu ,CA NHF Convention, New Orleans, LA Family Information Day & Hemophilia Walk

*Dates & locations are subject to change www.hemosocal.org Telephone: (323) 525-0440 Fax: (323) 525-0445

*Fechas y Lugares pueden cambiar . www.hemosocal.org Teléfono: (323) 525-0440 Fax: (323) 525-0445

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see our websites www.homecareforthecure.com & www.hemophilia-information.com 22

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E N T O D A L A N A C I Ó N

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Hemophilia Foundation of Southern California

NON-PROFIT ORG. U.S. POSTAGE PAID PASADENA, CALIF. PERMIT NO. 235

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

COTT Memorial Photo Collage,Washington, DC

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HemophiliAction

In Memory of Mark Leone