Promise and Progress as Spirits Soar Life in a Dynamic Learning Environment

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1 A publication of the Hemophilia Foundation of Southern California Volume 7 Issue 4 Winter 2010 Promise and Progress as Spirits Soar Life in a Dynamic Learning Environment Hemophilia Foundation of Southern California 6720 Melrose Avenue Hollywood,CA Tel: Fax:

2 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, MD. President Tamara Kato, VP Fundraising Doris Quon, MD, Medical Director Judy Mangione Secretary Staff Linda Corrente, Executive Director Helena Smith, Office Manager Melissa Franzen, VP Board Development Giovanny Pernudi Garry Bissonnette Jorge Catedral Hemophilia Foundation of Southern California 6720 Melrose Ave. Hollywood, CA Tel: (323) Toll Free: (in CA only)(800) Fax: (323) Special Thanks Tamara Kato, Proofreader Angie Yanez, Spanish Translation Linda Corrente, Editor Mark Elias, Art Director Web: President s Report I am very pleased to report that our Foundation is doing extremely well. Our recent Walk which was our second such event raised over $110,000 and brought together a large group of very spirited and giving people from our community. Our earnings put us in third place for top Walk fundraising among all of the participating NHF chapters. I want to personally thank our staff for such an outstanding job, as well as all our team captains, team members and sponsors for a job well done. It was also a privilege to attend our retreat in September at Camp Malibu and begin to know so many of you on a more personal level. I was particularly inspired by the awesome talent that was generated at our America`s Got Talent show which featured many participants from all ages singing, doing comedy, dancing, and even chewing large amounts of marshmallows. The band was also wonderful. I am hopeful that next year we will be able to expand this great fun-filled event even more. We had many other sessions, including a well attended advocacy session, which will hopefully inspire many more people to get involved. Our Board of Directors is still looking for additional qualified individuals to fill a few vacant seats. I have found this a very rewarding experience and would recommend that any of you who would like to give back to the community by volunteering your time in this leadership role to please contact the Foundation. Our meetings Reporte del Presidente Estoy muy orgulloso de reportar que la Fundación esta extremadamente bien. Nuestra caminata reciente, la cual fue nuestro evento de este tipo, recolecto más de $110,000 y unió a la comunidad, un grupo grande de personas con gran animo y ganas de donar. Nuestras ganancias nos ponen en tercer lugar como la Fundación que Recolecto más fondos en la Caminata entre todas la Fundaciones participantes de NHF. Les quiero agradecer personalmente a nuestros empleados por un gran trabajo, y también a nuestros capitanes de los equipos, miembros de los equipos y patrocinadores por un gran trabajo. Fue un placer el participar en el retiro en septiembre en el Campamento Malibu ya que pude empezar a conocer a muchos de ustedes a un nivel personal. Estuve particularmente inspirado por el gran talento que se provoco en nuestro show de America Tiene Talento el cual incluyo a muchos participantes de todas la edades cantando, como comediantes, bailando, y también masticando grandes cantidades de dulces. La banda también fue una gran adición. Estoy esperanzado que el próximo año podremos mejorar este evento aun Dr. Richard Metz are once per month. Most meetings are by conference call with one in-person meeting each quarter. Your presence on the Board gives you a say as to what programs and events we sponsor throughout the year. In closing I wish you all a very happy holiday season. May the coming year bring good health and fortune to our Foundation and our entire community. Richard J. Metz, M.D. President Hemophilia Foundation Southern California mas. También tuvimos otras sesiones incluyendo a una sesión de advocación muy bien participada, la cual ojala inspire a muchos otros a que mas personas se involucren. Nuestra Junta de Directores todavía esta buscando individuos adicionales calificados para llenar una sillas vacantes. Encontré que este año fue una experiencia muy gratificante y se la recomiendo a cualquiera de ustedes, si están interesados en devolver a la comunidad al ser voluntario en un papel de liderazgo, por favor comuníquese con la Fundación. Nuestras reuniones son una vez al mes. Casi todas la reuniones son por llamada de conferencia con una reunión en persona una vez cada tres meses. Su presencia en la Junta le da una voz en que programas y eventos debemos patrocinar a través del año. Para finalizar, les quiero desear unos Felices Días Festivos. Espero que el año nuevo les traiga salud, y buena fortuna a nuestra Fundación y toda la comunidad. Richard J. Metz, M.D.

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4 Executively Speaking Promise and Progress As 2010 concludes, I look back at our year s educational and social activities. The active involvement is booming with overall participation up and creating waiting lists for camp, and the retreat. Through our eyes we see what our founding parents dreamed for their children. Just fifty six years ago, they wanted their children to live a long and productive life. I feel so deeply that their spirit is with all of us as your children skip and run at our retreat, camp, and at the Hemophilia Walk. They promised to improve the quality of life for the bleeding disorder community when they began the Foundation. And we are living the progress of the efforts of all. It is our privilege and honor to see one of the founding parents, Gerry Green as an active member and participant. we are fiscally strong and our continued efforts to reduce costs and seek new revenue streams have benefited the programs. I am especially proud of the staff and board members for their work in increasing our fund raising. As we look toward a future of economic uncertainty, I have two priorities to help the Foundation increase our impact per dollar spent. The first is to make sure our internal processes run smoothly by creating an environment in which our staff can do its best work. My second priority is to improve the quality of our external partnerships, which are our lifeblood. Thank you to our corporate and individual donors. As we address these important issues, we will be guided first and foremost by how this work contributes to our overarching goal of helping improve the lives of the bleeding disorder community. In the end, impact is why we re here, pursuing excellence while promoting inclusiveness and respect for differences. As you view the scholarship winners in this issue, know that they are our promise and progress and may their spirits soar. Merry Christmas and Happy Holidays, Linda Corrente Executive Director This has been a very hard year for foundations and nonprofits and the near future doesn t look any easier. Many nonprofits have fewer resources at precisely the moment when the need for their services is greatest. However, Promesa y Progreso Ya que el 2010 concluye, miro hacia atrás a nuestras actividades sociales y educativas. La participación activa esta mejorando con participación aumentando y creando listas de espera para el campamento y el retiro. A través de nuestros ojos, vemos lo que los padres que empezaron nuestra Fundación soñaban para sus hijos. Solo cincuenta años atrás, ellos querían que sus hijos vivieran una vida larga y productiva. Siento algo muy profundo de que el espíritu de ellos esta con nosotros mientras los niños corren y brincan en el retiro, campamento y en la Caminata de Hemofilia. Ellos prometieron mejorar la calidad de vida para la comunidad con enfermedades sanguíneas cuando empezaron la Fundación. Y nosotros estamos viviendo el progreso y los esfuerzos para todos. Es un privilegio y un honor de ver a una de las Madres Fundadoras, Gerry Green como un miembro activo y participante. Este ha sido un año difícil para Fundaciones y organizaciones sin fines lucros- y el futuro cercano no se ve fácil. Y muchas organizaciones sin fines lucros, tienen menos y menos recursos y precisamente en el momento en que mas las necesitan. Sin embargo, estamos físicamente fuertes y nuestro continuo esfuerzo para disminuir el costo y buscar nuevos recursos de fondos los cuales han beneficiado los programas. Estoy especialmente orgullosa de los empleados y miembros de la junta directiva por su trabajo en mejorar nuestra recolección de fondos. Nuestro Hemophilia Treatment Centers Doctors at the Walk, Dr. Doris Quon, Dr. Nadia Ewing impacto por cada dólar gastado. La primera es de hacer nuestro proceso interno que siga más sin incidentes, para crear un ambiente en el cual nuestros empleados puedan hacer el mejor trabajo posible. Mi segunda prioridad es de mejorar la calidad de colaboración externa, las cuales son nuestra línea de vida. Gracias a nuestros patrocinadores corporativos e individuales. Mientras dirigimos la atención a temas importantes, nos estaremos guiando primero que todo por como este trabajo contribuye a nuestra meta total de ayudar y mejorar las vida de la c o m u n i d a d c o n enfermedades sanguíneas. Al final, el impacto es por lo cual estamos aquí, siguiendo e x c e l e n c i a m i e n t r a s Dr. Guy Young & sons, Corey Parker & daughter, & Linda at the Walk promovemos respeto de diferencias. Ya que vea a los ganadores de las becas en esta revista, ellos son nuestra romesa y progreso y que sus espíritus vuelen. Feliz Navidad y Felices Días Festivos, Con Cariño, Linda Corrente Directora eejcutiva. 4

5 2010 Donors Thank You for your Generosity 2010 Donors! Titanium Sponsors ($50,000 & above) Baxter BioScience Novo Nordisk Platinum Sponsors ($25,000- $49,000) Bayer Healthcare CSL Behring Gold Sponsor ($20,000- $24,999 Silver Sponsor ($15,000- $19,999) Mark Leone Summer Camp Fund Bronze Sponsors ($10,000- $14,999) Aida & Philip Leone Factor Support Network Pharmacy Copper Sponsors ($5,000- $9,999) Baxter International Brothers Healthcare Catherine Leone & Keith Lehmann Grifols USA Guided Alliance $1,000-$4,999 Accredo/HHS Acme Healthcare Baxter Employee Run Baxter Golfers Baxter Thousand Oaks Baxter Van Nuys Baxter Westlake Walkers Biomed Pharmaceuticals Bioscript Caremark Therapeutic Services Carlos Santa Cruz Children s Hospital Orange Co. Children s Hospital Los Angeles City of Hope Conrad & Marie Janis Coram Hemophilia Services Edison International Gary Johnson HCG Healthcare Hemophilia Alliance Hemophilia Association of San Diego Herndon Pharmacy Homecare for the Cure Inclinix Inc. Jonathan Dahan Kevin Shaughnessy Make A Wish Foundation Miller s Children s Hospital, Long Beach National Cornerstone Healthcare Services Octapharma Orthopaedic Hospital Patrick McKeown Pauline Logan Premier Hemophilia Care Prudential Overall Supply Rudi Schulte Foundation Scott Carthey Talecris Biotherapeutics Tawny Phan United Way Walgreens/Optioncare $500-$999 Alpha Omega Chapter Angela Acevedo Community Health Charities Davidson Hotel Diane Linarez Ellis Sulser Greg Rich Hope at Home. Joe Pugliese Leslie Muir Michael Amash Robert Parkinson Richard & Jane Metz Richard Rice Rudi & Berta Schulte Angles Sempra Energy Shawn Simmons Terry Rice $100-$499 Albert Venegas Alexia Farrell Allen Cato Alona Metz Amy Britton Amy Joe Andrew Hrisanthopoilas Ann Oisthoom Anne Schindler Anthony Tiedje Arthur Burkhard Ashok Patel Barbara Ketchum Bernard Glynn Berton Bradley Billy Zardenetta Bio -Tech Bernie & Gisela Stowers Brian Fleury Brian Quon Brian Taylor Brian Tran Capable Transport Carl Morris Jr. Carlos Ribadeneira Carol Kasper, MD Carolina Salstrone Caroline Ritchie C. Hearn Charles & Betsy Cook Charles Eckert Cheryl Lawrence Christina Chow Christina Defloria Christine Morgan Christopher & Melissa Davis Cindy Horvath Clem Adkins Clinton Lee Clinton Palmer Connie Romero Corey Parker Crista Tirtilli Dan Garofalo Daniel Monti Daniel Robison Dario Serna David Ackerson David Ballintine Dean Hulbert Deborah Birndorf Deborah Kravitz Diane Brandes Donations Made In Honor: Los donativos Hicieron En el Honor July - November 2010 ClemAdkins Baxter Bioscience Bejamin Hom Sheldon & Maria Hom Israel Vasquez Jr. Israel & Laura Vasquez Jr. Diane Hulbert Diego Fairbanks Div Cor Inc. Dixie Olson Donna Gallegos Doris Quon, MD ECHO Edison International Edmund Merino Edward & Barbara Gomperts Ellen Greenberg Erik Brenizer Eva Bastida Express Scrip F. Lebrecht Francis Lao Frank & Vivian Stefkovich Gabriela Mora Gayathri Ganesan Gilbert Ursulo Gloria Lawrence Camp donors, Catherine Leone and Keith Lehmann Gloria Loo Greg Ware Guidepoint Global Guillermo Zuniga Harold & Sally Crawford Harold Vandeinse Heather Almond Heather Armstrong Heather Griffin Hilary Polk Howard Simon J. Gordon McComb, MD Jack Lenny Jackie & Don Feinstein Jaime Morales James Franzen James Gavin James Lolis James Yonago Jamie Weaver Jared Andrus Jay Amundson Jay Glick Jeanie McKay Jeffrey Gardner Jeannette & Renan Pulecio Jennie Trejo Jesus Cortez Jesus Ramirez Joan Franzen Joann Cunningham Jodi Hill Joe Blum John Horton John Sansone John Skhal Jose Corral Joy Peterman Judith Franzen Judy Minami Julie Hotchkiss Justin Furniss Kandis Spector Karlene Dockery Katherine McDonald Kathleen Rooney Kathy Melgar Kathy Zarate Kay & Tom Bergsland Keith Murray Kermit Newcomer Kerri Boeddeker Kieron Mcfadyen Kim Hanson Kramer-Wilson Insurance Kris Chen Kristan Martinez L.A. Frigone Lauretta Logan Laura Cox Leslie Harris Leslie Vincent Leticia Cisneros Linda Clough Lita Fernandez Lucinda Hey Lyle Sexton Lyman Goldsmith Lynn Lawrence Man Do Margaret Darby Marie Kissel Marina Akselrud Marianne & George Bakic Marianne Diaz Marie Kennedy Marilyn August Marion Diener Marisela Cordero Mario Saragossa Marsha Carthey Martin Lee Martin Serna Marshal Fichman Mary Esparza Mask Inc. Matthew March Maureen Ridley Max Debrouwer McKay & Co. Meldon C. Levy, MD Michael Coyne Michael & Melissa Franzen Michael Lazo Michael Baldridge Michael Chaikin, MD Michael Erspamer Michael Saragossa Michael Self Michael Suarez Michelle Gilmore Michelle Harris Michelle Jimenez Michelle Rhoads Michelle Samuelson Monica Cervantes Nadia Ewing, MD Nancy Lee Nancy Leonard Nathan Timmons Ndidi Obidoa Nestor Linarez Niccole Reiner Niesje Heusden Optometric Vision Care Oscar & Ginny Campbell Parrott Bay Patricia Carter Patricia Lee In Memory/En Conmemoracion Michael Schmidt Sandra Schmidt Mary J Wallis Herb Williams Arron Velez Antonio Velez Luverne Hays Christopher Hays Joseph Hays Thomas Hays Teresa Hays Horner Paul Baker Paul Ko Pauline Wong Perry Parker Peter Cajthamil Peter May Peter Parker Phillip Johnson Rachel Mercier Raymond Wong Rena Robles Renee Mann Ricardo Lopez Richard Kaplan Richard Protzel Rick Reveles Robert Caplan Robert Friedman Robert Horvath Robert Rodriguez Roberto Castillo Robin McGowan Rodrick Ronald Salgado Rosby Lamm Rosa Vasquez Sam Berkow Sandra Knight Scott Hastings Scott Vollet Sharon Soo Hoo Shelby Dietrich, MD Sheri Schneider Shawn Noormand St. Catherine School Stephen Copps Stephen & Katherine Webster Stephen & Toni Dowling Stephen Welch Steven Brown Sunny Pearson Susan Brown Susan Kingston Susan Mellana Suzanne Galen Sylvia Morlaes Takeda Pharmaceuticals Tamara & David Kato Ted Fu Teresa Hays-Horner Thomas Bissonnette Thy Tran Teresa Laughery Terri Erspamer Thomas Bergsland Timothy McFadden T. M. Landscape Tobin Ellis Tonia Gould United Bluegrass United Way Veronica Diaz Victor Espinosa Victor Ramirez Vince Luong Vivian Szeto Vonda Andrews Walter Johnson William Day William & Judy Metscher William Morgan, MD William Reiner William Stopher William Tiedje Wilmer & Judith Pittman Wing Yen Wong, MD Yetsuko Hanamoto Yolanda Padilla Dr. Laurence J. Logan Julia Donlou Shelby Dietrich MD Dr. Edward & Barbara Gomperts Natalie Hartigan William Morgan MD 5

6 2010 Annual Hemophilia Walk! On October, 9, 2010, the Hemophilia Foundation held its 2nd annual Hemophilia Walk at the historic Los Angeles Coliseum. It started off as a bright and sunny day, but not even the sun could outshine our outstanding Walk teams and individuals who came out to walk to raise funds and awareness about hemophilia and other bleeding disorders. For the past few months leading up to the Walk, teams and individuals alike had been effortlessly raising funds on their own which would go towards crucial research, advocacy and education. Teams showed off their team pride with specially made team t-shirts and it was great to see everyone in such high spirits as the Walk prepared for its start. After Kaylee Score belted out the National Anthem, the Walk officially kicked off with a total of 940 walkers eagerly setting their feet on the starting line. Walkers continued to smile through the sweat and heat as they finished each lap, cheering each other on right to the finish line. What awaited the walkers at the finish line were hugs, smiles, high-fives, walk medals to symbolize their participation in the Hemophilia Walk, and better yet, ice cream provided by our national sponsor, Baxter! Even after every individual had completed the walk, everyone remained at the Coliseum, enjoying the beautiful California weather, munching on an array of food donated by Baxter, Bayer, Pfizer, and meeting other families who share the same experiences as one another. During this time, National Hemophilia Foundation s Mary Ann Ludwig recognized our national sponsor, Baxter, Bayer and Talecris. The Foundation s Executive Director, Linda Corrente, President of the Board, Dr. Richard Metz, and longtime community member Gerry Green, presented special awards to teams. The Most Creative T-Shirt Design went to Team Julian with their brightly colored Sesame Street inspired t-shirts. The Most Unique Team Name award went to The Brat Pack whose unique name nabbed them much attention and Love for Lucas took home the prize of Largest Number of Team Members. The motorcycles parked in front of the Coliseum were hard to miss and its riders, representing Team Isaac, collected donations on the spot earning them the award for Most Spirited Team. The Top Team Fundraiser-Community award went to Lego Star Wars Infusionators who raised a whopping $9,036.50! The Top Individual Fundraiser was Michael Franzen, who also represented Lego Star Wars Infusionators. The Top Team Fundraiser-Industry went to Baxter whose team raised an unbelievable $15,096! Grifols came in a close second place with an amazing $11,915. We also want to recognize our Team Captains who did an excellent job holding the teams together: Antonio Rosas (Accredo s Hemopilia Health Services), Albert Jimenez (Albert Jimenez), Clem Adkins (Baxter BioScience Team Adkins Western Warriors), Robert Friedman (Baxter BioScience Team Friedman), Elizabeth Szczepanek (Baxter BioScience Thousand Oaks), Stacie Delaney (Baxter BioScience Westlake Village), Gus Hernandez (Baxter BioScience Los Angeles & Van Nuys), Karen Arrieta (Bayer s Cruisers for Bruisers), Linda Reyes & Gabriela Mora (BioScrip Walkers), Kevin Shaughnessy (Brothers Healthcare), Brenda Santa Cruz (Carlitos Family), Tamara Kato (Comfort Keepers), Reina Castaneda (CVS Caremark Factor Footers), Susan Shannon (Friends and Family of Team S.H.A.R.E), Ana Sosa (Gladiators), Wendy Whoriskey (Gold Star Magnets), Irene Maldonado (Got Factor?), Bernard Glynn (Grifols), Connie Inglis (Guided Alliance Team), Betsy Cook (High Desert Turtles), Bonnie Mills (Inspiration), Melissa Franzen (Lego Star Wars Infusionators), Linda Corrente (Linda s Party Walkers), Michelle Jimenez (Love for Lucas), Dr. Richard Metz (Ninja Stars), Ruby Villavisencio (OMG HTC Walkers), David Paup (Pfizer), Ruby Enriquez (PHC), Marcie Reynolds (Reynolds), Patrice Little (Ribbons for Research), Lisa Pullens (Road Runners), Karl Score (Team Cure), Ellis Sulser (Team Ellis), Megan Noller (Team HFSC), Eric Macias (Team Isaac), Jose Corral (Team Jackson), Victor & Valinda Ribadeneira (Team Julian), Brittny Mellana (Team Mellana), Leslie Shimasaki (Team Shimasaki), Eddie Soto (Team Taylor), Joshua Nuno (The Bleeders), Tanya Robison (The Brat Pack), Amanda Molina (The Bruisers), Debbie Black (Tnd Cornerstone), Matthew Kempf (Walgreens There s a Way), and Shelly Haight (Walk for Dustin Factor IX). In the end, it didn t matter what team you were representing or how much you had raised but what mattered was that everyone s hearts were in the same places, which was to raise funds and awareness about hemophilia and other bleeding disorders. We thank everyone who showed their support by participating in our Hemophilia Walk. With all your help, the Foundation raised $110,935!! We are so proud to have such a tight-knit community and we look forward to seeing all of you at next year s walk. Thank You for Your Support at our 2nd Annual Hemophilia Walk! Total Number of Walkers: 940 National Presenting Sponsor Baxter BioScience National Milestone Sponsor Bayer Healthcare National Supporting Sponsor Pfizer Inc. National Event Sponsor Talecris Biotherapeutics Gold Sponsor ($5,000-$15,000) Grifols Novo Nordisk CSL Behring Bronze Sponsor ($1,000-$7,000) Factor Support Network Children s Hospital Los Angeles Children s Hospital of Orange County City of Hope Miller Children s Hospital Long Beach Walgreens Orthopaedic Hospital 6 Supporter ($500-$4,500) CVS Caremark Brothers Healthcare Accredo s Hemophilia Health Services BioScrip Octapharma Premier Hemophilia Care National Cornerstone Healthcare Services Industry Teams Baxter Healthcare, $15,096 Grifols, $11,915 Brothers Healthcare, $5,215 CVS Caremark Factor Footers, $2,091 BioScrip Walkers, $1,695 PHC Team Ellis Accredo s Hemophilia Health Services Tnd Cornerstone Guided Alliance Team Biomed Super Cruisers Road Runners Bayer s Cruisers for Bruisers Friends and Family of S.H.A.R.E Team Cure Walgreens There s a Way Pfizer Community Teams Lego Star Wars Infusionators, $9, Team Robbie, $4,320 Love for Lucas, $3,635 Team Shimasaki, $3,335 Carlitos Family, $3, Team Jackson Ninja Stars Team Julian Got Factor? OMG HTC Walkers The Bleeders Walk for Dustin Factor IX Team Mellana Inspiration Gold Star Magnets Team Isaac Team HFSC The Brat Pack Linda s Party Walkers Comfort Keepers High Desert Turtles The Bruisers Reynolds Ribbons for Research Albert Jimenez Gladiators Team Taylor

7 Caminata Anual de Hemofilia 2010! En octubre 9, 2010 la Fundación de Hemofilia tuvo su 2nda Caminata de Hemofilia Anual en el histórico Coliseo de los Ángeles. Empezó como un día asoleado, pero el sol no pudo detener a nuestros grupos de Caminantes e individuos que vinieron a la caminata para recolectar fondos y educar sobre hemofilia y otras enfermedades sanguíneas. Durante los meses pasados acercándose a la caminata, grupos e individuos ambos, han estado recolectando fondos fácilmente los cuales serán usados para investigación, advocación, y educación. Grupos demostraron su orgullo con camisetas hechas y fue un place ver a todos con su espíritu mientras la Caminata se preparaba para su comienzo. Después de que Kaylee Score cantó el himno nacional, la caminata oficialmente empezó con un total de 940 caminantes animados de empezar la caminata. Caminantes continuaron sonriendo durante el sudor y el calor mientras terminaban cada vuelta, animándose a si mismos al llegar al final. Lo que les esperaba a los participantes fueron abrazos, sonrisas, y medallas de la caminata para simbolizar su participación en la caminata de Hemofilia, y aun mas, helados proporcionados por nuestro patrocinador nacional, Baxter. (Inspiration), Melissa Franzen (Lego Star Wars Infusionators), Linda Corrente (Linda s Party Walkers), Michelle Jimenez (Love for Lucas), Dr. Richard Metz (Ninja Stars), Ruby Villavisencio (OMG HTC Walkers), David Paup (Pfizer), Ruby Enriquez (PHC), Marcie Reynolds (Reynolds), Patrice Little (Ribbons for Research), Lisa Pullens (Road Runners), Karl Score (Team Cure), Ellis Sulser (Team Ellis), Megan Noller (Team HFSC), Eric Macias (Team Isaac), Jose Corral (Team Jackson), Victor & Valinda Ribadeneira (Team Julian), Brittny Mellana (Team Mellana), Leslie Shimasaki (Team Shimasaki), Eddie Soto (Team Taylor), Joshua Nuno (The Bleeders), Tanya Robison (The Brat Pack), Amanda Molina (The Bruisers), Debbie Black (Tnd Cornerstone), Matthew Kempf (Walgreens There s a Way), and Shelly Haight (Walk for Dustin Factor IX). Al final, no importo cual Equipo Usted representaba o cuanto recolecto pero lo que importaba era que el Corazón de todos los participantes estaba en el mismo lugar, el cual era de recolectar fondos y aumentar conocimiento sobre hemofilia y otras enfermedades sanguíneas. Les agradecemos a todos por su apoyo al participar en nuestra Caminata de Hemofilia. Con toda su ayuda, la Fundación pudo recolectar 110,935!! Estamos muy orgullosos de tener una comunidad tan unida y esperamos verlos a todos el próximo año. Aunque cada individuo había completado la caminata, todos se mantuvieron en el Coliseo, disfrutando del gran clima de California, comiendo de una variedad de comida donada por Baxter, Bayer, Pfizer, y conociendo a otras familias que compartieron la misma experiencia como cada uno. Durante este periodo, May Ann Ludwig de la Fundación Nacional de Hemofilia reconoció a nuestros patrocinadores nacionales, Baxter, Bayer, y Talcris. La Directora de la Fundación, Linda Corrente, Presidente de la Junta Ejecutiva Dr. Richard Metz, y miembro de la comunidad de mucho tiempo Gerry Green, presentaron premios especiales a los grupos. El grupo con el Diseñó mas Creativo en Camiseta se le dio al Equipo Julian con sus camisetas de color radiante inspiradas por La Plaza Sesamo. El Nombre de Equipo mas Creativo fue al equipo Brat Pack por el cual su nombre único les dio mucha atención y el equipo Love for Lucas tomó el premio por el Equipo con mas Participantes. Las Motocicletas se estacionaron en frente del Coliseo y fueron difíciles de perder y sus motociclistas representaron al equipo Team Isaac, los cuales recolectaron fondos en ese mismo lugar y se ganaron el premio de Mejor Animo. El equipo de Recolección de Mas Fondos de la Comunidad se gano el premio los Lego Star Wars Infusionators quienes recolectaron $9,036.50! El Individuo que mas Recolecto fue Michael Franzen, que también representaba a Lego Star Wars Infusionators. El de Recolección de Mas Fondos en la Industria fue a Baxter que recolecto un increible $15,096! Grifols llego cerca con segundo lugar con un increible $11,915. También queremos reconocer a los Capitanes de los Equipos quiene hicieron un gran trabajao en juntar a sus equipos (Accredo s Hemopilia Health Services), Albert Jimenez (Albert Jimenez), Clem Adkins (Baxter BioScience Team Adkins Western Warriors), Robert Friedman (Baxter BioScience Team Friedman), Elizabeth Szczepanek (Baxter BioScience Thousand Oaks), Stacie Delaney (Baxter BioScience Westlake Village), Gus Hernandez (Baxter BioScience Los Angeles & Van Nuys), Karen Arrieta (Bayer s Cruisers for Bruisers), Linda Reyes & Gabriela Mora (BioScrip Walkers), Kevin Shaughnessy (Brothers Healthcare), Brenda Santa Cruz (Carlitos Family), Tamara Kato (Comfort Keepers), Reina Castaneda (CVS Caremark Factor Footers), Susan Shannon (Friends and Family of Team S.H.A.R.E), Ana Sosa (Gladiators), Wendy Whoriskey (Gold Star Magnets), Irene Maldonado (Got Factor?), Bernard Glynn (Grifols), Connie Inglis (Guided Alliance Team), Betsy Cook (High Desert Turtles), Bonnie Mills Before After My name is Judy Redmond and I attended the Hemophilia walk in Los Angeles with my son and family. My son, Loren Redmond has severe Hemophilia A with inhibitors and type 1 Diabetes. This walk was our first one and I have to say it was a huge accomplishment for my son. When he was 10 years old, he had a lot of trouble with his knees and became wheelchair bound. If it wasn t for Dr. James Luck and getting a radiosynovectomy on both knees I don t think he would be able to walk today. Watching him complete the walk was a huge milestone in our lives! I m so glad we were able to attend. I am sending you a few of our photos from the day, thank you for all of your support with the bleeding community! 7

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9 Koate Reminder Ad_BDI_Print Ready_AMC_LMR Approved_08-09.pdf 9/3/ :33:38 PM C M Y CM MY CY CMY K You are encouraged to report negative side effects of prescription drugs to the FDA. Visit or call FDA Talecris Biotherapeutics, Inc. All rights reserved. Printed in USA August 2009 KD

10 Camp Blood Brothers and Sisters Campers that earned their Big Stick Award: Marvin Bindoy Mike Bindoy Albert Jimenez Mason Schneidet Osean McClintock Miles Cole James Levai Fiach Echandi Carson Knight Raul Ibarra (port) Jose Dominguez Isaac Shin Bryant Miron Campers that earned the Big Courage award, for attempting to self infuse at camp: Joshua Aponte Enrique Dominguez Jose Aguilar We also recognized 2 campers who were extremely supportive and encouraging to all the other campers going for their big stick. Those campers were Andrew McElhatton ( LIT ) and Dustin Huerta. 10

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12 Hemophilia is just one small part of life for Nick and Cody. ADVATE therapy allows them to treat their bleeds as their doctor prescribes and go on with their lives. Karen Chicago, IL Make hemophilia a smaller part of your life Contact your doctor for more information Important Risk Information for ADVATE Therapy You should not use ADVATE if you are allergic to mice or hamsters or any ingredients in ADVATE. You could have an allergic reaction to ADVATE. Call your doctor right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, light-headed, dizziness, nausea, or fainting. Your body may form inhibitors to factor VIII, which may stop FVIII products including ADVATE from working properly. Contact your doctor if you are not able to prevent or control bleeding episodes with your regular doses of factor VIII therapy. Side effects that have been reported with ADVATE include: cough, sore throat, unusual taste, abdominal pain, diarrhea, nausea, headache, fever, dizziness, hot flashes, chills, sweating, joint swelling, itching, hematoma, and swelling of legs. Call your doctor right away about any side effects that bother you. Please refer to adjacent page for Brief Summary of Prescribing Information. ADVATE [Antihemophilic Factor (Recombinant), Plasma/Albumin-Free Method] is a medicine used to replace clotting factor VIII that is missing in people with hemophilia A. ADVATE is used to prevent and control bleeding in people with hemophilia A. Your doctor may give you ADVATE when you have surgery. ADVATE is not used to treat von Willebrand s disease. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit or call FDA Baxter and Advate are registered trademarks of Baxter International Inc. Copyright (April 2010), Baxter Healthcare Corporation. All rights reserved. HYL

13 Family Retreat and Camp Reunion The 2010 Hemophilia Foundation of Southern California Family Retreat took place on the weekend of September 10-12, at the Wilshire Boulevard Temple Camps & Conference Center located in beautiful Malibu. It was a getaway unlike any other for over 200 families and community members as they experienced a family camp full of energy and excitement. Upon entering the campgrounds, families were greeted by a game of baseball, led by Ivan Sada. With ice breakers such as human bingo, fellow community members had the opportunity to meet and greet with other families while enjoying live music by Kaylee Score and her band. The first night s events concluded with delicious s mores by the campfire. The second day of the retreat was full of activities and entertainment to last a lifetime. National Hemophilia Foundation s Team Hemophilia joined us as they led leadership games and encouraged youth to live active and healthy lifestyles. Meanwhile, the men went on a beach and nature hike with amazing views of Malibu beach, a chance for the dads and adult men of the community to bond. The women, on the other hand, enjoyed a peaceful and quiet yoga session with instructor Jennifer Banando. After the morning activities, everyone gathered to enjoy a BBQ lunch on the field while Fulcrum Adventures Inc. started setting up for rock climbing and the ropes course. All the children hurriedly finished their meals as they eagerly awaited their turn in line for the hit activity of the day. For the few who chose not to participate in this activity, the swimming pool was another option or the arts and craft booth. Daryle Palmer, Principal of McGaugh Elementary, and Corey Dubin, President of Committee of Ten Thousand (COTT), made a special appearance at our retreat to lead an advocacy presentation touching on the subject of building self-reliance in your child in order to successfully navigate the school system, insurance companies, and the medical community. The theme dinner, coordinated by Melissa Franzen & Judy Mangione, had children and adults alike, dressing up as their favorite super hero while others detailed their favorite memories of camp. After the amazing dinner brought to you by head chef John Bard, the Foundation hosted its own Hemophilia Foundation s Got Talent, where you could showcase your amazing talent on stage for the chance of a lifetime. So Long Feathered Friend band and Rachael Lynn provided live entertainment throughout the evening. The Family Retreat is a program geared towards the bleeding disorders community and creates an opportunity for these individuals and families to come together and share their concerns in a fun-filled weekend designed not only to lend support, but to provide an opportunity to learn coping skills that will help them deal with hemophilia more effectively, from both a physical and psychological perspective. We could not have organized this retreat without some help from our sponsors: Baxter, Bayer Healthcare, CSL Behring, Novo Nordisk, Factor Support Network Pharmacy, Coram, Philip and Aida Leone, Catherine Leone and Keith Lehmann. Thank you to all the individuals and families who attended our Family Retreat and we hope to see you again next year! Retiro Familiar 2010 El Retiro Familiar de La Fundación de Hemofilia del Sur de California 2010 tomo lugar el fin de semana de septiembre en el Wilshire Boulevard Temple Camps & Conference localizado en hermoso Malibu, CA. Fue una huida como ninguna otra para más de 200 familias y miembros de la comunidad mientras pudieron tomar parte de un campamento lleno de energía y emoción. Al entrar al área del campamento, familias fueron bienvenidas por un juego de béisbol, dirigido por Ivan Sada. Con rompe hielo como Bingo Humano, miembros de la comunidad tuvieron la oportunidad de conocer y saludar con otros hemofílicos y familias con hemofilia mientras disfrutaban música en vivo por Kaylee Score y su banda musical. Los eventos de la primera noche concluyeron con deliciosos postre s mores en seguida de la fogata El segundo día del retiro familiar estuvo lleno de actividades y entretenimiento para durar para toda una vida. El Equipo Hemofilia de la Fundación Nacional de Hemofilia se unió mientras se encargaban de juegos y animaban a los jóvenes a vivir una vida activa. Mientras tanto, los hombres fueron a la playa y una caminata en la naturaleza con increíbles vistas de la Playa de Malibu, una oportunidad para padres y hombres adultos de la comunidad para unirse. La mujeres, disfrutaron una sesión de yoga silenciosa y tranquila hecha por instructo Jennifer Banando. Después de las actividades de la mañana, todos se reunieron para disfrutar de un almuerzo Bar-b-que sobre el campo mientras Fulcrum Adventures Inc. Empezó a arreglar la pared de piedras para ascender y actividad de lazos. Todos los niños rápidamente terminaron su comida mientras esperaban su turno en la línea para hacer la actividad del día. Para aquellos que prefirieron no participar en esta actividad, la piscina fue otra opción o la mesa de artes. Daryle Palmer, el Director de McGaugh Elementary, y Corey Dubin, Presidente del Comité de Diez mil (COTT), hicieron una presencia a nuestro retiro para hacer una presentación de advocación tocando en el tema de crear auto-confianza en su niño para poder navegar el sistema escolar en una forma exitosa, compañías de seguro, y la comunidad medica. El tema de la cena, coordinada por Melissa Franzen & Judy Mangione tenia a los niños y adultos vestidos como su súper héroe favorito mientras mucho detallaban sus recuerdos favoritos del campamento. Después de la gran cena, hecha por el gran Chef John Bard, la Fundación fue anfitrion del primer La Fundacion de Hemofilia Tiene Talento, donde participantes podían demostrar su fantástico talento. Así que Long Feather Friend y Rachel Lynn tomaron parte del entretenimiento en vivo por toda la noche. El retiro familiar es un programa hecho para la comunidad con enfermedades sanguíneas y crear una oportunidad para estos individuos y familias a unirse juntos y compartir sus preocupaciones, en un fin de semana lleno de diversión diseñado no solo para prestar apoyo, pero para proveer una oportunidad para aprender habilidades para sobrepasar y ayudar las cuales le ayudaran a lidiar con el cuidado de hemofilia mas efectivamente, de ambos la perspectiva física y psicológica. No podríamos haber organizado este retiro sin la ayuda de nuestros patrocinadores: Baxter, Bayer Healthcare, NovoNoridsk, Factor Support Network, Coram, CSL Behring, Philip y Aida Leone, Catherine Leone y Keith Lehman. Gracias a todos los individuos y familias que vinieron a nuestro Retiro Familiar y esperamos verlos de nuevo el próximo año. 13

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16 CHRISTOPHER MARK PITKIN SCHOLARSHIP WINNERS The Hemophilia Foundation of Southern California is pleased to announce the winners of the Christopher Pitkin Scholarships. This year s winner is Jonathan Michael Ramirez of Lancaster, California. Jonathan attends Antelope Valley College, where he is earning an Associates Degree in his chosen area of study: Astronomy. His career goal is to become an astronomer, and it has been a lifelong dream for him. Ever since I was a little kid, the stars and planets have always been something that caught my attention, Jonathan writes. As a person with hemophilia, he does not let his disorder get in the way of his dreams. I also have a little brother with this condition, and he looks up to me a lot. So I want to show him that anything is possible if you put your mind to it. The Foundation received forty five scholarship applications, and was able to award twelve additional honorable mention scholarships to the following students: Rosaura Cisneros of Los Angeles, John Paul Kim of Los Angeles, Sabrina Ortiz of Whittier, Sarah Jarboe of Redlands, Pablo Alejandro Sosa or Fairbanks Ranch, Carl Schwarz of Three Rivers, Kristi Friesen of San Francisco, Stephen Pascucci of San Diego, Jetty Sapinoso of San Diego, Brittany Sonnenberg of Trabuco Canyon, Emma Byrne of Cotati, and Giovanna Rodriguez of Santa Maria. ABOUT THE CHRISTOPHER MARK PITKIN MEMORIAL SCHOL- ARSHIP The scholarship fund has been created to honor the memory of Chris Pitkin, health policy consultant, advocate, leader in the hemophilia community, former president of the Foundation, and a beloved friend of many. Chris was known for his clear-headed ability to set goals and priorities and to pursue them to attainment. Many of those who knew him benefited from his encouragement to set their own goals, move forward and further develop their own potential. In keeping with his beliefs and his actions, this scholarship is awarded to individuals who demonstrate these principals of goal-orientation and motivation. Scholarship awards of are based primarily upon the applicants statements of goals and intentions, with secondary consideration given to the location (priority-southern California); progress and school, community contributions, extent of need, etc. Scholarships are available to members of the hemophilia community: men and women with hemophilia or other bleeding disorders, spouses/ partners, parents, children and siblings. In particular, persons living with hemophilia and HIV and their family members are encouraged to apply. This year s scholarships will be awarded for education following high school (college, technical/trade training) for the school year GANADORES DE LA BECA CHRISTOPHER MARK PITKIN La Fundación de Hemofilia del Sur de California esta orgulloso en anunciar los ganadores la Beca de Christopher Pitkin del Este año el ganador es Jonathan Michael Ramirez de Lancaster, CA. Jonathan es un estudiante en Antelope Valley College, donde el adquirirá un Grado Asociado en su carrera específica: Astronomía. La meta de su carrera es astrónomo, y ha sido un sueño de toda su vida. Desde que Yo era niño, las estrellas y los planetas siempre me causaban curiosidad, Jonathan escribe. Como un paciente con hemofilia, el no permite que su enfermedad sea una barrera de sus sueños. Yo también tengo un hermano menor con esta condición y el me admira, así que le quiero demostrar que cualquier cosa es posible si uno se empeña. La Fundación recibió muchas solicitudes para la beca, y pudo premiar a doce ganadores mas: Rosaura Cisneros de Los Angeles, John Paul Kim de Los Angeles, Sabrina Ortiz de Whittier, Sarah Jarboe de Redlands, Pablo Alejandro Sosa de Fairbanks Ranch, Carl Schwarz de Three Rivers, Kristi Friesen de San Francisco, Stephen Pascucci de San Diego, Jetty Sapinoso de San Diego, Brittany Sonnenberg de Trabuco Canyon, Emma Byrne de Cotati, y Giovanna Rodriguez de Santa Maria. SOBRE LA BECA EN CONMEMORACION DE CHRISTO- PHER MARK PITKIN MEMORIAL La beca fue creada en honor y conmemoración de Chris Pitkin, un consultante y apoyante de póliza de salud, un líder en la comunidad hemofílica, previo presidente de la fundación y apreciado amigo de muchos. Chris fue conocido por su habilidad de hacer metas y prioridades y seguirlas hasta atenerlas. Muchos de los que lo conocían beneficiaron de su animo e hicieron sus propias metas, siguieron adelante, y mejoraron su potencial. En mantener sus creencias y sus acciones, esta beca se le premiara a un individuo que demostró sus principios y motivación y orientación de metas. Premios de la becas serán basados principalmente por las declaraciones en la solicitud, con consideración secundaria al lugar (prioridad en el Sur de California), progreso y escuela, contribuciones a la comunidad, y necesidad, etc. Becas están disponibles para miembros de la comunidad hemofílica: hombres y mujeres con hemofilia u otra enfermedad sanguínea, esposas/esposos, padres, hijos y hermanos o hermanas. En particular, personas viviendo con hemofilia y VIH y sus familiares se les anima a que apliquen. La Becas de este año serán premiadas para la educación siguiendo la Secundaria (Universidad, Entrenamiento Técnico) para el año escolar de

17 MEET THE SCHOLARSHIP WINNERS Carl Schwarz is currently attending California State University Channel Islands, majoring in Environmental Science/Resource Management. His goals are to finish college and work for the National Park Service or a similar federal agency. I am pleased to be acknowledged by the Hemophilia community, as I believe this sense of community has truly shaped my goals and the person I am today. Growing up, I was lucky enough to experience a side of Hemophilia that exhibited constant strength. My father was always so kind and caring to anyone he encountered in his life, which shaped the same drive within myself. I hope to peruse a career in the health care field where I am able to help others as my parents always did in their own lives. - Emma K. Byrne As a pediatric patient who also has small tumors in her brain, my goal is to make a positive impact on the lives of other chronically ill children and encourage them. Sabrina Ortiz. Sabrina is attending Whittier College where she plans to major in child development. She works with preschool students through the Jumpstart Program and is a member of the Children s Hospital of Orange County s leadership board. As a 23 year old who stepped into the real world at a young age, away from his home to experience life and its responsibilities as an adult, Jetty Sapinoso is on the path to accomplish his goals in establishing a career in the medical field. He is working to obtain a bachelor s degree in the radiologic technology field. Distracted by friends, nightlife and the party scene, I am proud to say that I am one of the few of my group of friends striving to accomplish my goals. Giovanna Rodriguez is an eighteen-year-old student who currently attends Santa Barbara Business College. She is working to obtain an Associates of Science degree in Pharmaceuticals to become a pharmacy technician. Her dream is to earn a PHD in Pharmaceuticals and work at the best hospital in the world. That hospital will be Cottage Hospital in Santa Barbara, CA, Giovanna says. Sarah Jarboe is currently a freshman at California Baptist University as a Kinesiology major with an emphasis in Sports Medicine. She hopes to graduate in three years and then move on to get either a master s in Athletic Training or a doctorate in Physical Therapy. Having experienced numerous sports injuries herself, she wants to be able to provide the same inspiration and encouragement that her orthopedic surgeon and physical therapist gave her. Sarah is passionate about athletes and their ability to do what they love and she can t wait to step into the arena of sports medicine. JohnPaul Kim is attending El Camino College, with plans to transfer to a 4-year university. Having hemophilia had me in rebellion ways during my adolescent years. I am blessed to able to turn my life around and get back on track! I truly believe I can achieve great things in life if I put my mind to it. I would like to encourage all young friends to stay in school and stay focused. Thank you so much for the scholarship I received from the Hemophilia Foundation of Southern California. I am very motivated to reach my goal with my university studies. My plan is to finish college and graduate from DeVry University with a degree in Computer Science, specializing in the medical field. My desire is to use my knowledge and give back to my community. Pablo Sosa Brittany Sonnenberg is 18 years old and is attending San Francisco State University. She plans to major in Social Work. Her favorite thing to do is go to concerts and shows of her favorite bands on the weekends with her friends. She also loves to travel and hopes that this summer she can visit Africa. Kristi Friesen is pursuing her B.S. in nutritional sciences at Bastyr University in Seattle. She is planning on a career in Clinical Dietetics, and possibly opening a restaurant someday. Her focus is using whole foods nutrition to strengthen the immune system. Her two brothers have hemophilia and she is a carrier. Kristi enjoys yoga, cooking, movies and walking her English Mastiff. 17

18 Plants Help Prevent Inhibitors and Allergic Reactions Using genetically modified plants, researchers from two Florida universities are developing a technique that could help prevent treatment-related complications such as inhibitors, an immune reaction that neutralizes infused factor, and anaphylaxis, severe allergic reactions, in people with hemophilia B. The lead authors of the study were Dheeraj Verma, PhD, Department of Molecular Biology and Microbiology, College of Medicine, at the University of Central Florida (UCF) in Orlando and Babak Moghimi, MD, Department of Pediatrics, College of Medicine, at the University of Florida (UF) in Gainesville. Inhibitors result in approximately 25% of patients with hemophilia A and up to 4% of patients with hemophilia B. Clinicians often use immune tolerance (IT) induction to eliminate an inhibitor. By administering daily doses of factor over time, the body begins to tolerate the therapy. The process is similar to desensitization therapy used to treat food and environmental allergies. The technique is less effective in individuals with hemophilia B than in those with hemophilia A. In addition, because of the large amounts of factor used, IT becomes very expensive. The approach being developed by Verma, Moghimi and colleagues could be more cost effective. The researchers used a so-called gene gun to insert the genetic material that manufactures factor IX (FIX) into chloroplasts, the energy production centers of plants. They then fed the modified plants to mice with hemophilia B for a prolonged time period. Insulated from digestive acids and enzymes by durable plant cell walls, the FIX protein traveled through the stomach and into the small intestines. Once inside the small intestines, bacteria then broke down the cell walls and released the protein, which induced tolerance by the immune system. We have made them develop tolerance, and removed the allergic part of this treatment, said coauthor Henry Daniell, PhD, a Pegasus professor and University Board of Trustees Chair in the College of Medicine at the UCF. Later the mice were infused with factor product, which triggered little to no inhibitor responses and no anaphylactic events. I think this is a milestone - nobody has previously achieved such levels of robust immune tolerance by any means using a noninvasive procedure, explained Thierry Vandendriessche, PhD, an associate professor of medicine at the University of Leuven in Belgium, who was not involved in the study. He is president of the European Society of Gene Cell Therapy. Investigators will conduct follow-up studies to test the approach in mice with hemophilia A and then carry out trials in humans using lettuce to produce the therapeutic proteins. We re hoping that our research will, in the future, result in better and more cost-effective therapies, said study co-author Roland Herzog, PhD, an associate professor of pediatrics, molecular genetics and microbiology in the UF College of Medicine and a member of the UF Genetics Institute. Herzog received the National Hemophilia Foundation s Career Development Award in The study, Oral Delivery of Bioencapsulated Coagulation Factor IX Prevents Inhibitor Formation and Fatal Anaphylaxis in Hemophilia B Mice, was published in the April 2010 issue of the Proceedings of the National Academy of Sciences. Source: e! Science News, March 30, 2010 Plantas ayudan a Prevenir Inhibidores y Reacciones Alérgicas Usando plantas genéticamente modificadas, investigadores de dos universidades de Florida están desarrollando una técnica que puede ayudar a prevenir complicaciones relacionadas al tratamiento tales como inhibidores, una reacción inmuta que neutraliza el factor usado, y anafilaxis, reacciones alérgicas severas, en personas con hemofilia B. El autor líder del estudio fue Dheeraj Verma, PhD del Departamento de Biología Molecular y Microbiología, Colegio de Medicina, en la Universidad de Florida (UFC) en Orlando y Babk Moghimi, MD Departamento de Pediatría, Colegio de Medicina, en la Universidad de Florida (UF) en Gainesville. Resultado de Inhibidores en aproximadamente 25%de los pacientes con Hemofilia A y hasta un 4% de pacientes con Hemofilia B. Clínicos a menudo usan inducción tolerancia inmunológica (IT) para eliminar un inhibidor. Al administrar la dosis diariamente de factor durante el tiempo, el cuerpo comienza a tolerar la terapia. El proceso es similar a la terapia de desensibilizar usada para tratar alergias de comida o al ambiente. La técnica es menos efectiva en individuos con hemofilia B que en aquellos con Hemofilia A. Adicionalmente, por la grande cantidad de factor, IT se es muy costosa. El plan de acción que esta siendo desarrollado por Verma, Moghimi puede que sea de mejor costo. Los investigadores usaron un tal llamado gene gun (gene pistola) para introducir el material génico que fabrica factor IX (FIX) en el cloroplasto, los centros de producción de energías de la plantas. Luego le dieron las plantas modificadas a los ratones con hemofilia B por un periodo prolongado. Aislado por ácidos digestivos, y encimas por las paredes durables de la planta, la proteína de FIX paso por el estomago hacia el intestino delgado. Ya que esta en el intestino delgado, la bacteria descompone las paredes celulares y liberan la proteína, la cual indujo tolerancia al sistema inmuno. Los hemos hecho que desarrollen tolerancia, y eliminado la parte alérgica de este tratamiento, dijo uno de los autores Henry Daniell, PhD, un profesor Pegasus y Cabeza de la Junta de Fideicomisarios en el Colegio de Medicina de UCF. Después, a los ratones se les dio una infusión de producto de factor, el cual ha disparado poco a ninguna respuesta inmunológica y ningún evento anafiláctico. pienso que esto es un gran éxito- nadie previamente ha podido lograr tales niveles de tolerancia inmunológica robusta, de ningún otra forma sin usar formas no invasivas explico Thierry Vandendrissche, PhD. Un profesor asociado de medicina de la Universidad de Leuven in Bélgica, quien no estaba involucrado en el estudio. El es presidente de la Sociedad Europea de Terapia Génica. Investigadores harán estudios continuos para examinar el enfoque en ratones con Hemofilia A y luego hacer las investigaciones en humanos usando lechuga para producir las proteínas terapéuticas. Esperamos que nuestras investigaciones, en el futuro, nos darán resultados de mejores terapias y menos costosas y mas efectivas, dijo uno de los autores Roland Herzog, PhD, un profesor asociado de pediatría, genética molecular y microbiología en el Colegio UF de Medicina y un miembro de UF Instituto Genético. Herzog recibió el premio de Desarrollo de Carrera en el 2000 de la Fundación Nacional de Hemofilia. El estudio, Entrega Oral Bioencapsulado de Coagulación de Factor IX Previene Formación de Inhibidor y Anafilaxis Fatal en Ratones con Hemofilia B fue publicado en volumen de abril del 2010 de Procedimientos de la Academia Nacional de Ciencias. Source: e! Science News, March 30, 2010 Helping families with bleeding disorders since 1994 FSN is a specialty pharmacy dedicated to providing comprehensive care and support to persons with hemophilia 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. 18 CONTACT 24 Hour On-Call Support Next Day Delivery Client Services Representatives in Your Area Infusion Log Support Client-Centered Services Education Scholarships Community Support Randy DeSantis * Edmund Merino * English & Spanish Speaking FSN OFFICE VISIT * FSN is an in-network factor provider for GHPP, CCS and Tri-Care

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