HemophiliAction - Hemophilia Foundation of Southern California

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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HemophiliAction
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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HemophiliAction
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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



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

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


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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
HemophiliAction
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We’ve expanded your playlist...
Now available in a 3000 IU vial size
BAYER, the Bayer Cross, and KOGENATE are registered trademarks of Bayer.
BIO-SET is a registered trademark of Biodome SAS.
©2009 Bayer HealthCare Pharmaceuticals Inc. All rights reserved Printed in USA
7/09
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HemophiliAction
13AM
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.
HemophiliAction
CarePlus_HemoSoCal_QuarterAd_0309_v2.indd 1
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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
Hemophilia Health Services
...for the human factor
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REST INSURED.
We understand how costly
and unpredictable living with bleeding
disorders can be. That’s why our exclusive
therapy support program includes a
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navigate the insurance process for you.
Whether verifying coverage or
tracking lifetime maximums, we take the
burden off your shoulders so you can enjoy
life with a little more ease.
A personal touch from
people who know bleeding disorders.
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HemophiliAction
Accredo Health Group, Inc., is a
wholly owned
subsidiary of Medco Health
Solutions, Inc.
© 2009 Medco Health Solutions, Inc.
All rights reserved.
GET YOUR GAME FACE ON
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New GameFaces™ from Helixate® FS—
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Log on to www.HFSGameFaces.com
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Come back to the site to log your physical activity progress
When you complete a challenge, you will be entered in a
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www.CSLBehring-US.com
Printed in USA
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11/2008
Take Life On
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HemophiliAction
17
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.
18
HemophiliAction
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.
HemophiliAction
19
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
PAT I EN T
R ESO UR CES
COMMUNITY
PROGRAMS
INSURANCE
& ADVOC ACY
CLINIC AL
INITIATIVES
Factor VIII & Inhibitor
Management Therapies
Resource Programs
for Hemophilia Care
& Challenges
Patient & Community
Educational Programs
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
20
HemophiliAction
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
12/1/09 10:22 PM
DREAMSKIN SPA
DREAMSKIN SPA
Microdermabrasion Oxygen Facial
Microdermoabrasión Facial de Oxígeno
Special Offer $50
Oferta Especial $50
$10 on every facial purchased will go to support the
$10 de cada facial comprado apoyará a la
HEMOPHILIA FOUNDATION OF SOUTHERN CALIFORNIA
FUNDACION DE HEMOFILIA DEL SUR DE CALIFORNIA
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
Llame para hacer una cita y apoyar a la Fundación de Hemofilia
DreamSkin Clinical Spa
DreamSkin Clinical Spa
8817 West Olympic Blvd. Beverly Hills CA 90211
8817 West Olympic Blvd. Beverly Hills CA 90211
(310) 286-1600
(310) 286-1600
HemophiliAction
21
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
Anunciamos...La Empresa
que Espera Cerrar Para Siempre.
Announcing...The Company
that Hopes to Close Forever.
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Joining TOGETHER to help find the CURE
We Supply Everything that people with
Bleeding Disorders need.
Then we donate to research for the
CURE
It’s Simple...Order your factor from us
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Founders
Karl & Della Score 877 836-7832
N
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Familias con Trastornos Hemorrágicos
UNIDOS para ayudar a encontrar la Cura.
Distribuimos Todo lo que las personas con
Trastornos Hemorrágicos necesitan.
Después donamos para la investigación la
CURA.
Es simple… Ordene su factor a través de
nosotros Y ayude a curar los Trastornos
Hemorrágicos PARA SIEMPRE.
Hágalo por el futuro de su familia…
¡Hable ahora mismo!
Epecialistas de Apoyo en Espanol
Vanessa Sandoval
Gabriela Griffin
909 557-8189
626 354-4651
see our websites www.homecareforthecure.com & www.hemophilia-information.com
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HemophiliAction
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N
T
O
D
A
L
A
N
A
C
I
Ó
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HemophiliAction
23
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
24
HemophiliAction
In Memory of Mark Leone