HemophiliAction - Hemophilia Foundation of Southern California

HemophiliAction - Hemophilia Foundation of Southern California

HemophiliAction
A publication of the Hemophilia Foundation of Southern California Volume 7 • Issue 2 • Summer 2012
What sunshine is to flowers, smiles are to humanity.
Smiles are but trifles, to be sure; but scattered along life’s pathway, the good they do is inconceivable.
- Joseph Addison
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
Executively Speaking
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
Greg Mermilliod, President
Tamara Kato,
V.P. Board Development Jorge Catedral,
Advocacy Chair
Michael Franzen, Members:
Treasurer Richard Metz
Doris Quon, MD, Giovanny Pernudi
Medical Representative
Judy Mangione,
Secretary
Staff
Linda Corrente, Executive Director
Charles J Cook, Social Worker
Andressa Rogers, Office Assistant
Helena Smith, Office Manager
Grace Yi, Office 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
Summer
Sizzles As
We Cook
Up Fun and
Fabulous
Events
Summer
break,
remember
when you
could take
a break
from your schedule. A time to relax,
go fishing, swimming, and reading a
good book. For some this may only be
a childhood memory and for us at the
Foundation office we are cooking up a
jammed packed schedule of events and
programs for you to pick and choose
what fits into your busy lives.
Today many organizations and
companies such as your pharmaceutical
company, your home care company
and your hospital and Hemophilia
Treatment Center are providing
educational programs and events for
you to attend. Are you overwhelmed
with programs and events to attend or
would you like more? We would like to
hear from you and what you may need.
We may not be able to do everything for
everyone, however we do need to hear
from you and plan for programs that
meet your needs.
The Foundation flagship programing is
summer camp, family information day,
educational scholarships, emergency
assistance, and support and connections
to families in the bleeding disorder
community.
The two big events still to come are the
family weekend retreat in September
and the Hemophilia Walk on October
27. So plan to join us to meet and mingle
with members of the bleeding disorder
community.
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Linda welcomes Sokhet Yen and Soeang Leang to the Education Day at the Autry
Musuem
So as the summer sizzles, enjoy your time with family and friends. May you all have an
endless summer.
Sincerely,
Tel: (323) 525-0440
Toll Free: (in CA only)(800) 371-4123
Fax: (323) 525-0445
E-mail: [email protected]
Web: www.hemosocal.org
Linda Corrente welcomes Cowgirls and Cowboys at the Autry Musuem
Linda Corrente
Executive Director
Hablando Ejécutivamente
El Verano Quema mientras Cocinamos Diversión y
Eventos Fabulosos
Descanso de Verano, recuerda cuando podíamos descansar
del horario. Un periodo de relajación, ir a pescar, nadar, leer
y terminar un buen libro. Esto es solamente una memoria de
niñez y para nosotros en la Oficina de la Fundación estamos
cocinando un horario lleno de eventos y programas para que
usted pueda escoger, que quepan en sus vidas ocupadas.
Hoy muchas organizaciones y compañías tales como
compañías farmacéuticas, su compañía de cuidado en casa
y su hospital o Centro de Tratamiento de Hemofilia están
proporcionando eventos educacionales para que usted
participe. Se siente inundado de eventos o programas o
¿quiere más? Queremos escuchar lo que usted piensa y lo que
necesita. No podremos hacer todo para todos, sin embargo,
necesitamos escuchar de usted y planear programas que
satisfacen sus necesidades.
Las metas de programas de la Fundación es el campamento
de verano, día de información familiar, becas educativas,
asistencia de emergencia, y apoyo y conexiones a familias en la
comunidad con enfermedades sanguíneas.
Los dos eventos que todavía vienen será el retiro familiar en
septiembre y la caminata de Hemofilia octubre 27. Así que haga
planes en reunirse y convivir con nosotros y miembros de la
comunidad con enfermedades sanguíneas.
Así que mientras el verano quema, disfrute el tiempo con
Keith Lehmann, Aida and Catherine Leone honored at the Mark and Philip Leone Memorial Golf and
Tennis Classic
familia y amigos. Esperamos que ustedes tengan un verano
interminable.
Sinceramente,
Linda Corrente
Executive Director
Hemophilia Care at Home
• Local Pharmacies
• Nationwide Services
• Hemophilia-Trained Nurses and Staff
• Patient Support 24/7
For comprehensive services
Call: 866-436-4376 or
Fax: 888-688-3593
En Español: 800-456-1923
WalgreensHomeCare.com/bleedingdisorders
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Cowboys and Cowgirls Gathered for
Educational Hoedown
The elegant Autry National Center was the place to be as we
hosted another triumphant Family Information Day on May
19, 2012. It was a gorgeous day to saddle up and take in the
latest scoop on hemophilia related topics including insurance,
advocacy and much more.
Linda Corrente, Hemophilia Foundation Southern California’s
(HFSC) Executive Director, started the hoedown welcoming
the cowgirls and cowboys along with guest speakers and Rodeo
Mega Title sponsors, Novo Nordisk and Baxter.
While the kids gathered with The Painted Turtle volunteers for
some fun, their parents attended informational panels lead by
guest speakers. Dr. Doris Quon, from Orthopaedic Hospital,
moderated the Doctor’s Panel with other hemophilia specialists
including Dr. Nadia Ewing, City of Hope; Dr. Carol Kasper,
USC; and Dr. Lance Sieger, Harbor/ UCLA Medical Center.
Jonathan VanderBrug, Advocacy Consultant for Hemophilia
Federation of America and HFSC Board Member, Jorge
Catedral, guided the advocacy panel that followed the Doctor’s
Panel.
At lunch time participants delighted themselves with gourmet
sandwiches and cookies and visited sponsors’ booths with
interactive educational topics covering travel with hemophilia,
exercise and nutrition and school. Booth sponsors included
340B Outpatient Factor Programs of Southern California,
Baxter, Bayer Healthcare, Biogen Idec Hemophilia, BioRX,
Brothers Healthcare, Caremark Therapeutic Services, Coram
We’re
You
with Coram’s Hemophilia Services
ƒ Pharmacy and nursing services
ƒ Educational support for bleeding disorder patients
ƒ Spanish language services
888.699.7440 | coramhemophilia.com
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Hemophilia Health Services, CSL Behring, Curascritp, Factor
Support Network Pharmacy, Grifols Therapeutics, Guided
Alliance Healthcare, HF Healthcare, Homecare for the Cure,
Kedrion, Novo Nordisk, Octapharma, Orthopaedic Hospital,
Premier Hemophilia Care, Quality Home Infusion, TnD
Cornerstone, Crescent Healthcare – Walgreens and Pfizer.
Baxter and Novo Nordisk also participated as Rodeo Mega
Sponsors, CSL Behring as Wild Wild West Lunch Sponsor and
Bayer Healthcare and Grifols as Bronco Sponsors.
The HSFC Family Information Day Roundup concluded with
a panel on insurance updates and more lead by HFSC Social
Worker, CJ Cook. Judy Mangione, HFSC Board of Directors,
and Karen Wyatt-Coleman, Helpline Youth Counseling Inc.,
participated in the panel sharing their experience as parents
of hemophilia kids. While Cathy Buranahirun, CHLA; Silvia
Vega, CHLA; and Lisa Pullens, City of Hope, brought in their
expertise in the hemophilia field to the panel.
Family Information Day provides families with a day of full
training, medical updates, product seminars, workshops, and
peer support groups specially geared towards meeting the
current needs of the hemophilia community. The Hemophilia
Foundation of Southern California is committed to aiding those
we serve in educating themselves so they will be empowered to
make informed decisions regarding their medical care.
Mark your calendars for 2013 Family Information Day on
February 9.
Vaqueros y Vaqueras de Reúnen para Evento
Educativo
El elegante Centro Nacional Autry fue el lugar anfitrión de otro
triunfo so Día de Información Familiar en mayo 19,2012. Fue un
día hermoso para prepararse y adquirir la información más actual
sobre hemofilia y temas relacionados incluyendo a seguranza,
advocación, y mucho más.
Linda Corrente, Directora Ejecutiva de la Fundación de Hemofilia
del Sur de California, empezó con la bienvenida a los todos
especialmente a os presentadores y patrocinadores de Rodeo
Mega, Novo Nordisk y Baxter.
Mientras los niños se reunían con voluntarios de Painted Turte
para mucha diversión, sus padres participaban en el panel de
invitados con presentadores que incluyeron: a la Dra. Doris Quon,
del hospital Ortopédico. La moderadora de Panel de doctores con
especialistas en Hemofilia incluyendo a la Dra. Nadia Ewing de
City of Hope; La Dra. Carol Casper, USC; y al Dr. Lance Sieger, de
Harbor/UCLA Medical Center. Jonathan Vanderburg, Consultante
de Advocación para la Federación de Hemofilia de América y
miembro de la Junta Directiva de HFSC Jorge Catedral, guio el
panel de advocación el cual siguió al panel de doctores.
Therapeutics, Guided Alliance Healthcare, HF Healthcare,
Homecare for the Cure, Kedrion, Novo Nordisk, Octapharma,
Orthopaedic Hospital, Premier Hemophilia Care, Quality Home
Infusion, TnD Cornerstone, Crescent Healthcare – Walgreens
and Pfizer. Baxter and Novo Nordisk, Octapharma, Orthopedic
Hospital, Premier Hemophilia Care, Quality Home Infusion, TnD
Cornerstone, Crescent Healthcare – Walgreens and Pfizer. Baxter
y Novo Nordisk también participaron como Patrocinadores de
Rodeo Mega, CSL Behring como el patrocinador de almuerzos y
Bayer Healthcare y Grifols como patrocinadores Bronco.
El Día de Información Familiar de HFSC termino con el panel de
seguros y actualizaciones y fue moderado por trabajador social de
HFSC CJ Cook. Judy Mangione, HFSC de la Junta Directiva,
y Karen Wyatt-Coleman, de la Línea de Ayuda de Jóvenes Inc.
Participaron en el panel compartiendo su experiencia como padres
de hijos con hemofilia. Mientras Cathy Buranahirum, Silvia Vega
de CHLA, y Lisa Pullens de City of Hope, trajeron su experiencia
en hemofilia al panel de presentadores.
El Día de Información Familiar en proveerle a familias un día de
entrenamiento complot, actualizaciones medicas, seminarios de
productos, talleres, y apoyo de uno al otro, guiado a entender las
necesidades actuales de la comunidad con hemofilia. La Fundación de
Hemofilia de Sur de California está comprometida en ayudar a aquellos
que servimos y en educarlos para que puedan tener el conocimiento
para hacer decisiones informadas sobre su cuidado médico.
Durante el almuerzo, los participantes disfrutaron de sándwiches
y galletas y visitaron las mesas de patrocinadores con temas
educativos e interactivos cubriendo como viajar con hemofilia,
ejercicio y nutrición, y escuela. Patrociandores de mesas incluyerón
al programa 340B del Sur de California, Baxter, Bayer Healthcare,
Biogen Idec Hemofilia, BioRX, Brothers Healthcare, Caremark
Therapeutic Services, Coram Hemophilia Health Services, CSL
Marque su calendario para el Día de Información Familiar de
Behring, Curascritp, Factor Support Network Pharmacy, Grifols
2013 en febrero 9.
Dads in action Any man can be a father, but it takes a special person to be a dad
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Moms “A mother is she who can take the place of all others but whose place no one else can take.” -- Cardinal Mermillod
Kids learning is fun!
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Philip and Mark Leone 29th Memorial Golf & Tennis Classic
“When someone you love becomes a memory, that memory becomes a
treasure.”
~Author Unknown
In that spirit, the Philip and Mark Leone 29th Memorial Golf
& Tennis Classic celebrated the memories of two beloved
community members and special friends when we gathered at
the beautiful Braemar Country Club to swing for smiles. The
clouds slowly gave way to the sun that came out to light up the
hearts of the golfers and tennis players playing for a cause.
The day started with a delicious early lunch on the terrace,
overlooking the golf course, followed by the golf tournament.
The players were greeted by the LA Lakers Girls and while
golfers were working their shots, tennis players got together
to practice their serve with professional tennis player, Scott
Burton. The Hooters Girls and the LA Temptation Girls added
even more fun to the golf course assisting with contest holes.
The cocktail reception started as the afternoon approached.
The fun continued with participants bidding on exciting auction
items that included an Elvis Presley guitar with signature decal
from Graceland, tickets to movie theaters and sports events as
well as restaurant gift certificates and gourmet wines.
Dinner was accompanied by live music, setting the tune for
another enjoyable evening with friends and family celebrating
Mark and Philip Leone. Linda Corrente opened the dinner
reception by recognizing the Leones’ incessantly effort to
improve the lives of the children we serve. Catherine and
Aida Leone and Keith Lehmann’s devotion to our community
graciously reminds us only that great things happen when we
put love in everything we do.
The generous support of sponsors like Catherine Leone and
Keith Lehmann, Baxter Bioscience, Novo Nordisk, Tal Inc.,
and many others made the success of our Golf & Tennis Classic
possible.
The Hemophilia Foundation Southern California Golf & Tennis
Classic is a yearly fundraiser event with proceeds benefiting
Camp Blood Brothers & Sisters and Mark Leone Camp Fund.
HFSC Tennis Classic Players
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This year’s Golf & Tennis Classic took place on June 11 at
the Braemar Country Club and it was made possible by the
generous donations of our sponsors as well as the support of
Golf and Tennis Committee and volunteers.
Our sincere THANK YOU to all of our sponsors and
supporters Because of you we continue improving children’s
lives…..1 shot at a time!
Title Sponsors: Baxter BioScience, Catherine Leone & Keith
Lehmann
Birdie Sponsor: Novo Nordisk
Lunch Sponsor: Tal Inc.
Player Package Sponsor: CSL Behring
Margarita Hole Sponsor: Factor Support Network
Tee Sponsors: Baxter BioScience, Novo Nordisk, Brothers
Healthcare, Factor Support Network, Bayer Healthcare,
Guided Alliance Healthcare Services, CSL Behring, Coram
Hemophilia Services, JP Healthcare, Stephen Trentacoste
– Trent Partners & Assoc., Biogen Idec, Octapharma, CF
Marketing, The Center for Comprehensive Care & Diagnosis
of Inherited Blood Disorders, Children’s Hospital Los Angeles,
Orthopaedic Hospital, City of Hope National Medical Center,
Miller Children’s Hospital, Long Beach.
Foursome Sponsors: Baxter Bioscience, Bayer Healthcare,
Brothers Healthcare, Caremark Therapeutic Services, Novo
Nordisk, CSL Behring, Richard Metz, MD, Biogen Idec,
Pfizer, Guided Alliance Healthcare Services, Quality Home
Infusion
Goody Bag & Auction Donors
Golf & Tennis Committee: Robert Friedman, Golf Chair; Dan
Goodwin, Golf Chair; Roland Neill, Auction Chair; Clem
Adkins, Tennis Chair; Antonio Rosas, Bernard Glynn, Karen
Arrieta, Jim Hinton, Brian Taylor, Lauren Klein.
We also want to thank all of the volunteers and Factor Support
Network for their donation in memory of John Marcum.
Wagner Lemus, Gilbert Ursulo, Jim Brenes
Philip y Mark Leone Torneo Clasico de Golf y Tenis 29
“Cuando alguien que tu amas se convierte en una memoria, esa memoria
es un Tesoro.”
~Autor Desconocido
Es ese espíritu a Philip y Mark Leone Torneo Clásico de Golf
y Tenis 29, celebro los recuerdos de dos miembros apreciados
de la comunidad cuando nos reunimos en el hermosos Braemar
Country Club para darle a la pelota por más sonrisas. Las
nubes
despaciosamente presentaron el sol y iluminaros los corazones
de jugadores de golf y de tenis jugando por una gran causa.
El día empezó con un almuerzo delicioso en la terraza, viendo
el campo de golf, seguido por el torneo de golf. Los jugadores
fueron bienvenidos por las LA Lakers Girls y mientras los
jugadores de golf practicaban, los jugadores de tenis jugaban
juntos para practicar con jugador profesional, Scott Burton.
La Hooter Girls y LA Temptation Girls añadieron aun mas
diversión al campo de golf ayudando durante el evento.
La recepción de cocteles empezó mientras la tarde llegaba.
La diversión continuaba con participantes en la subasta la
cual incluyo una guitarra de Elvis Presley con la firma de
Graceland, tiquetes a cine, eventos deportivos y tarjetas de
restaurantes vinos finos.
La cena fue acompañada por música en vivo, con un sonido
preparando una noche disfrutable con amigos, celebrando a
Mark y Philip Leone. Linda Corrente empezó la recepción de
cena al reconocer los esfuerzos imparables de la pareja Leones,
en mejorar las vidas de los niños que sirven. La devoción
de Catherine y Aida Leone y Keith Lehmann en nuestra
comunidad, no recuerda que solo cosas buenas pueden pasar
cuando hacemos todo con amor.
El apoyo generoso de patrocinadores como Catherine Leone Y
Keith Lehmann, Baxter Bioscience, Novo Nordisk, Tal Inc. y
muchos más hizo el evento un éxito y el Torneo de Golf y Tenis
posible.
La Fundación de Hemofilia del Sur de California Clasico de
Golf y Tenis es un evento anual para recolectar fondos con los
Larry Mangione, Tim Streck, JT White, Cameron White
resultados beneficiando al Campamento Blood Brothers and
Sisters y Mark Leone Fondo del Campamento. El Torneo de
Golf y tenis de este ano tomo lugar en junio 11 en el Braemar
Country Club y fue hecho posible por las donaciones generosas
de nuestros patrocinadores y también el apoyo del comité y los
voluntarios de Comité de Golf y Tenis.
Nuestro sinceros AGRADECIMIENTO a todos los
patrocinadores y apoyantes. Por ustedes podemos continuar
mejorando las vidas de los niños….1 piquete a la vez!
Patrocinador de Titulo: Baxter BioScience, Catherine Leone &
Keith Lehmann
Patrocinador Birdie : Novo Nordisk
Patrocinador de Almuerzo: Tal Inc.
Patrocinador de Paquete de Jugador: CSL Behring
Patrocinador de Hoyo de Margarita: Factor Support Network
Patrocinador de Tee: Baxter BioScience, Novo Nordisk,
Brothers Healthcare, Factor Support Network, Bayer
Healthcare, Guided Alliance Healthcare Services, CSL
Behring, Coram Hemophilia Services, JP Healthcare,
Stephen Trentacoste – Trent Partners & Assoc., Biogen Idec,
Octapharma, CF Marketing, The Center for Comprehensive
Care & Diagnosis of Inherited Blood Disorders, Children’s
Hospital Los Angeles, Orthopaedic Hospital, City of Hope
National Medical Center, Miller Children’s Hospital, Long
Beach.
Patrocinador de Equipo: Baxter Bioscience, Bayer Healthcare,
Brothers Healthcare, Caremark Therapeutic Services, Novo
Nordisk, CSL Behring, Richard Metz, MD, Biogen Idec,
Pfizer, Guided Alliance Healthcare Services, Quality Home
Infusion
Voluntarios
Donantes de Artículos de Bolsas y Subasta:
Comité de Golf & Tenis: Robert Friedman, Golf Chair; Dan
Goodwin, Golf Chair; Roland Neill, Auction Chair; Clem
Adkins, Tennis Chair; Bernard Glynn, Karen Arrieta, Jim
Hinton, Brian Taylor, Lauren Klein.
También queremos agradecerle a Factor Support Network por
su donación en conmemoración de John Marcum.
Tony Arrieta, Karen Arrieta, Ken Kokubun, Lee Worthy
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Golf (continued)
Dr. Michael Chaikin, Dr. Richard Protzel, Dr. Richard Metz, Dr. Meldon Levy
Larry Hammerness, M. Bailey, Robin Colle, Dave Colle, Raymond Lok
John Lee, Jeremy Lawson, Garry Chan, Brian Taylor
Marcus Evio, Corey Parker, Joe Pugliese, Mark Evio
Scott Carthey, Kevin Shaughnessy, Joel Hesgard
Pat Mckeown, George Martin, Edmund Merino, David Paup
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Golf (continued)
Tim McFadden, Greg Ware, Tim McFadden Jr., Doug Rauh
Hugo Estrada, Phil Montano, Donovan Wallace, Alex Estrada
Robert Friedman, Jeff Griffin, Steve Michelson, Matthew Habermehl
Graham Brearley, Matt LeClair, Jaime Morales, Kevin Westbrook
Mark Tevis, Dan Goodwin, Aerick Brown, Matt Bogust
Linda thanks the Lakers Girls
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Dealing with Stress in a Healthy Manner
Stress is all around us everyday: traffic,
work, new school, project due at work.
Having a bleeding disorder or being the
parent of a child with a bleeding disorder
also can add additional stress to your
everyday life as well. This very stress may
be affecting your health even if you do not
realize it.
We are all different and unique and the way
we react to stress is as unique as each of us.
Some react to stress or a particular stressor
through outbursts of anger, pain, smoking,
overeating or negative conversations with
others about the stress or stressors in your
life. Some withdraw and ignore the stressor
and move on without dealing with the issue
at hand in a healthy manner.
Some recommendations made by the Mayo
Clinic are to exercise and eat healthier.
Learn to balance stress with relaxation
which requires you to come up with your
own relaxation techniques, things that fit
into your busy schedule and lifestyle. Face
life head on with a positive outlook, laugh at
yourself when the time is right or just laugh
in general. Also ask for help from friends or
support groups you have created over the
years rather than doing it all yourself. Finally,
learn how to say no to things that you simply
do not have enough time to accomplish.
In the past several years in working with
adults with high pace and high stress jobs I
have recommended what is referred to as a
self recovery plan. The plan only requires a
3x5 card, a pen and what makes you happy
and less stressed. On the 3x5 card write
down what you feel is your get away, your
stress releaser, the activity that you can use
to bring yourself back to normal after a bad
day at work, a tough infusion or a bleed that
is causing you worry. An example of a self
recovery plan after a difficult infusion would
be to take a long walk with my child in the
park, or after a tough day at work I will ride
my bike alone before dinner. Some might like
to work out at a local gym or read a book
for 30 minutes. During this time you are
not allowed to think of the stressors in your
life, only happy thoughts and enjoying the
moment. Keep that 3x5 card in your pocket
as a reminder to take care of yourself when
you feel that stress is getting the best of you.
Commit to following your self recovery plan
when you feel you need that break.
According to the Mayo Clinic it is as equally
important for the bleeding disorder patient
and parents to learn how to reduce and
cope with stress. Parents can model healthy
nutrition, good sleep habits, exercise and
most importantly model how to cope in
a healthy manner with stress. If you as a
parent react to stress in a negative manner,
i.e. verbal anger outbursts, your child will
learn that behavior and react in a similar
manner. Another important piece to
handling stress is seeking professional help
to assist in dealing with stress before it leads
to depression, headaches, upset stomach,
sleep issues, fatigue and irritability.
As always you can contact the Hemophilia
Foundation’s office for support or referrals.
CJ Cook MBA
HFSC Social Worker
Lidiar con el Estrés en una Forma Saludable
Estrés esta alrededor todos los días:
congestión, trabajo, nueva escuela,
proyectos para entregar en el trabajo. Tener
una enfermedad sanguínea o ser madre
o padre de un hijo con una enfermedad
sanguínea también puede añadir estrés
adicional a la vida de todos los días. Este
estrés puede afectar su salud aunque no se
de cuenta.
Todos somos diferentes y únicos en la forma
que reaccionamos al estrés, el cual es único
a cada persona. Algunos reaccionan al
estrés o a una situación en particular, unos
sienten rabia, dolor, unos fuman, comen de
mas, o tienen conversaciones negativas con
otros, y si es como enfrentan el estrés en
sus vidas. Algunos se aíslan o ignoran las
situaciones estresantes y siguen sin lidiar
con la situación en una forma saludable.
Algunas recomendaciones hechas por
el Mayo Clinic son de hacer ejercicio y
comer más saludable. Aprenda a balancear
el estrés con relajación las cuales requieren
que usted empiece sus propias técnicas
de relajación, actividades que quepan
en su horario ocupado y su estilo de
vida. Enfréntese a la vida con una forma
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positiva, reírse a sí mismo cuando sea
apropiado o reírse simplemente en general.
También busque ayuda de amigos y grupos
de apoyo que usted ha creado durante los
años, en vez de hacerlo completamente
solo(a). Finalmente, aprenda cómo decir
no a cosas que simplemente no puede tiene
suficiente tiempo para completar.
En el pasado, varios años trabajando
con adultos en trabajos de alto estrés, he
recomendado a lo que se refiere a un plan
de recuperación de autoestima. El plan
solamente requiere una tarjeta de 3x5, una
pluma, y lo que lo (a) hace feliz y menos
estresado(a). La actividad que puede
usar para normalizarse después de un
día estresante en el trabajo, una infusión
difícil o sangrado difícil, que está causando
que se preocupe. Un ejemplo del plan
de recuperación de autoestima después
de una infusión difícil seria tomar una
caminata larga con su hijo (a) en el parque,
o después de un día difícil en el trabajo, yo
monto en bicicleta solo después de cenar.
A algunos les gusta ir al gimnasio o leer un
libro por 30 minutos. Durante este tiempo
usted no se le permite pensar en la situación
que le da estrés, solo pensamientos felices
y disfrutar el momento. Mantenga esta
tarjeta de 3x5 en su bolsillo como un
recordatorio para usted cuando se sienta
estresado(a). Comprométase en seguir
este plan de recuperación cuando piense
que necesita un descanso. Acuerdo a Mayo
Clinic es igualmente importante para el
paciente con la enfermedad sanguínea y
sus padres en aprender a como disminuir
y lidiar con estrés. Padres pueden modelar
nutrición saludable, hábitos de dormir
bien, y más que todo como lidiarlo en
una manera saludable. Si usted como
mama o papa reaccionan al estrés en una
forma negativa, por ejemplo; gritar, su
hijo(a) aprende el mismo comportamiento
y reacciona de la misma manera. Otro
punto importante es de manejar el estrés
y buscar ayuda profesional para ayudarle
en lidiar con el estrés antes de que llegue
a la depresión, dolores de cabeza, malestar
estomacal, problemas durmiendo, fatiga e
irritabilidad. Como siempre comuníquese
con su Centro de Tratamiento de Hemofilia
para verificar opciones de referencia.
CJ Cook MBA
HFSC Trabajador
A NY TI ME, A NYW HERE:
Keep your Factor on Track!
The first FREE, customizable mobile app
designed to help you track and record
your hemophilia A Factor VIII infusions:
If you’re on a prophylaxis regimen,
the app reminds you when to infuse.*
If you infuse on-demand, use the app
to record your bleeds and infusions.
LEARN MORE ABOUT DOWNLOADING FACTORTRACK AT
LivingWithHemophilia.com/FactorTrack
*Please note that an internet connection is required to receive infusion reminders.
This app is not intended to offer or replace professional medical advice. Speak to your nurse
or physician if you have any health concerns. You are encouraged to report negative side
effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
© 2012 Bayer HealthCare Pharmaceuticals Inc. All rights reserved. BAYER, the Bayer Cross and Living with Hemophilia are registered trademarks of Bayer.
Living Fit! A Joint Effort and FactorTrack are trademarks of Bayer. iPhone and iPod touch are registered trademarks of Apple Inc.
KN10001211
HemophiliAction
15
Southern California Hemophilia Walk
Southern California Hemophilia Walk
Participate in the Parade of Walkers at the Rose Bowl Stadium
Make a Difference for the Southern California Bleeding Disorders Community
Register to Walk and Start Fundraising Now! Hemophilia Walk, Saturday, October 27, The Rose Bowl Stadium, 1001 Rose Bowl Drive Pasadena,
CA 91103
The Hemophilia Foundation of Southern California has had amazingly successful walks in the past 3 years, thanks to our sponsors, teams,
individual fundraisers and volunteers. We never could reach our goals without you!
Join us this year for an even better walk!!! We already have 95 participants and 25 teams registered and 4 local sponsors secured. It is never too
early to start fundraising! Every dollar you raise puts us a step closer to finding a cure. Make a difference for our Southern California community
by registering today!
Our Big Thanks to Our:
Top Individual Fundraisers:
1. Matti Vann
2. Cindy Horvath
3. Sheri Schneider
4. Shauna Criner
5. Mickey Price
Top Teams:
1. Kedrion Biopharma
2. Coram Hemophilia Services
3. GaGa for Greyson
4. Love for Lucas
5. Team Shimasaki
Local Sponsors:
Bronze Sponsors – Guided Alliance Healthcare
Services, CSL Behring
Supporter Sponsors – Coram Hemophilia
Services, Kedrion
Caminata Del Sur De California
Caminata del Sur de California
Participe en el Grupo de Caminantes en el Estadio del
RoseBowl
Haga una gran diferencia en la Comunidad con Enfermedades Sanguíneas del Sur de California.
Regístrese para Caminar y empiece a recolectar fondos Ahora! Caminata de Hemofilia,
sábado, octubre 27, el Estadio de RoseBowl, 1001 Rose Bowl Drive Pasadena CA 91103
La Fundación de Hemofilia del Sur de California ha tenido caminatas muy exitosas en los
últimos 3 años, gracias a nuestros patrocinadores, equipos, individuos recolectando fondos
y voluntarios. !No podríamos llegar a nuestra meta sin Usted!
! !Únase este año para una caminata aun mejor!!! Ya tenemos 95 participantes y 25 equipos
registrados y cuatro patrocinadores locales asegurados. Nunca es muy tarde para empezar
a recolectar fondos! Cada dólar recolectado nos pone más cerca al encontrar la cura. !Haga
una gran diferencia para el Sur de California al registrarse hoy!
Nuestros Agradecimientos A:
Individuos Que Han Recolectado mas Fondos:
1. Matti Vann
2. Cindy Horvath
3. Sheri Schneider
4. Shauna Criner
5. Mickey Price
Hemophilia Walk Finish Line
Grupos que han Recolectado mas Fondos:
1. Kedrion Biopharma
2. Coram Hemophilia Services
3. GaGa for Greyson
4. Love for Lucas
5. Team Shimasaki
Patrocinadores Locales:
Patrocinadores de Bronze – Guided Alliance Healthcare Services, CSL Behring
Apoyantes – Coram Hemophilia Services, Kedrion
16
HemophiliAction
HemophiliAction
17
Community Members Participate at Staples
Center Events
June and July were busy months for some of our community
members as they got up close and personal with X Games
athletes, enjoyed an exciting soccer match and saw the Sparks
players in action.
We gathered an energetic group of kids to get a behind-thescenes look at the X Games LA, where the best action sport
athletes in the world compete on the sport’s largest stage. Their
day was filled with unique and exciting experiences that will
sure leave a lasting impression.
On July 5th some community members had the chance to see
the Sparks beat the Lynx, an intense matchup between the
top teams in the Western Conference. Still in July, four lucky
soccer aficionados watched as Chivas USA played host to the
Vancouver Whitecaps at the Home Depot Center. But even
with our community members cheering the players the match
ended in scoreless draw.
Thanks to the STAPLES Center Foundation and Chivas
USA for their generosity so our families can experience some
summer fun.
Nichole Haro, Fatima Alcantara, Kelly Cerrato, Ashley Fuentes, Alexis Ortega, Erick Fuentes, Fabian Alcantara, Anthony Ortega, Fernando Alcantara, Alexis Fuentes at the X Games
Miembros de la Comunidad Participan en
Evento del Staples Center
Junio y Julio fueron meses muy ocupados para algunos de
los miembros de nuestra comunidad ya que se acercaron a
los atletas de los X Games, disfrutaron un juego de futbol y
pudieron ver a equipo Sparks en acción.
Reunimos un grupo energético de niños y una mirada cercana
a los X Games de Los Angeles, donde los mejores atletas de
acción compiten en una de las pistas más grandes. Su día estuvo
lleno de experiencias únicas y divertidas que dejaran una gran
impresión en los niños.
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HemophiliAction
En julio 5 algunos miembros de la comunidad tuvieron la
oportunidad de ver al equipo Sparks ganarle a los Lynx, un
juego intenso entre dos equipos de la Conferencia del Este.
Todavía en julio, cuatro aficionados de futbol vieron a Chivas
USA jugar contra Vancouver Whitecaps en el Home Depot
Center. Pero aun con miembros apoyando a los jugadores el
juego termino sin goles.
Gracias ala Fundación del STAPLES Center y Chivas USA
por su generosidad para que nuestras familias pudieran tener
esta experiencia durante el verano.
2012 In Memory & In Honor of Donor Recognition
Reconocimiento de Donanes 2012
Donations listed are from –January - June
In Memory
Nick, Bobbie & Phil Green
Gerry Green
Osvaldo Figueroa
Bertha Portillo
Richard Katz
Judy & William Metscher
Ruth J Wolf
Philip Leone
Matthew Cilderman
Mary Chasse
Steven Delpidio
David & Diane Landrum
Lauren Lehmann
Patricia Lehmann
Dia Rosselo
Tal, Incorporated
Todd W. Pittman
Wilmer & Judith Pitman
Mark & Philip Leone 29th Memorial
Golf and Tennis Tournament
Edward L. Allum
Scott Caswell
David Hoag
Edward Kemp
Patricia Lehmann
Aida Leone
Catherine Leone & Keith Lehmann
Helen Lewis
John A. Mancina
C F Marketing
Ed Meenan
Tim Ottinger
Pinnacle Sales
Michael A. Sajecki
Cardinal Sales
Tal, Incorporated
Alan Taylor
Rosemary Thomas
Stephen Trentacoste
Laura Yocom
Blaine R Scott
Calvin R. Scott
In Honor of
Loren Redmond
Patricia Carter
For information about our factor products for hemophilia,
von Willebrand disease, and other rare bleeding disorders, or to
learn about our innovative patient programs, please call or email:
18 Years Servicing & Supporting
The Bleeding Disorders Community
“The Factor Support Network Approach”
Pursuing positive health outcomes
through professional, personalized
and efficient medication management.
Brian Taylor
Manager Coagulation Products, Southern California
[email protected]
858-525-3490 mobile
858-408-3566 fax
Making a difference today ~ for your future!
CONTACT Client Services Representatives in Your Area
Randy DeSantis 805-402-5952
www.CSLBehring.com
[email protected]
* Edmund Merino 909-709-1083
[email protected]
* English & Spanish Speaking
Toll Free: 877-376-4968
www.FactorSupport.com
HemophiliAction
19
Friends of the Foundation
Fundraising in the Community
We are very blessed to have great friends! Friends that believe in us and help us become
what we are capable of being. Friends like Elva Tarin who spearheaded a fundraising
campaign at the Resurrection Catholic School in Los Angeles, during the month of March.
The students participated with such engagement, donating over $1,500. in pennies nickels,
quarters and bills on behalf of our foundation.
Michael Kachoeff is another true friend who wants to make a difference. Michael’s
restaurant, a quaint little place in Whittier called The 6740, is celebrating its15th year
anniversary and is donating 15% of their net sales for 15 days to 15 organizations, including
ours. Our day will be July 20 and we’re hoping it will be one of the busiest days they have
ever had!
Andressa Rogers thanks Thabata Tarin, Samantha Tarin,
Elva Tarin for their donation
Amigos y Amigas de la Fundación Recolectando
Fondos en la Comunidad.
!Estamos bendecidos de tener a grandes amigos y amigas! Amigos y Amigas que creen en ayudarnos en ser lo que podemos ser. Amigas
como Elva Tarin quien tuvo una campana para recolectar fondos en la Escuela Católica Resurrección de Los Ángeles, durante el mes de
marzo. El estudiante participa en tal, donando $1,500 en pennies, nickles, quarters y efectivo directamente a la Fundación.
Michael Kachoeff también es otro verdadero amigo quien quiere hacer una gran diferencia. El restaurante de Michael es un lugarcito en
Whittier llamado The 6740, y el está celebrando su aniversario 15 con una donación de 15% de sus ventas por 15 días a 15 organizaciones,
incluyendo la nuestra. !Nuestro día será el 20 de Julio y esperamos que sea uno de los días más ocupados que ellos han tenido!
SAVE THE DATE!!!
CSL Behring & Factor Support Network
are hosting a
Women’s Educational Weekend
in BEAUTIFUL Santa Barbara California
Oct. 5th - 6th, 2012 - Location to be announced soon!
This program is for ladies 11 years of age and above, affected with von Willebrand
Disease (vWD), hemophilia, carriers of hemophilia and mom’s and/or caregivers
of those with vWD or hemophilia.
JOIN US
For an exciting weekend, make lifelong friendships, share your stories and ideas,
RELAX and enjoy some good food.
CONTACT RANDY DESANTIS - (805) 402-5952
For more information or to RSVP
SPACE IS LIMITED!!!!
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HemophiliAction
340B Outpatient Factor Programs proudly offer:









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Hematologists on-call 24 hours a day, 7 days a week for your family’s peace of mind
All brands of factor in a wide selection of assays
An extensive list of ancillary products - plus, we never bill you or your insurance
company for infusion supplies, specialty needles, port supplies, or wraps
Attentive and knowledgeable Customer Service Representatives
Pre-paid and mailable sharps containers at no cost to you
Reimbursement Expertise with local and national payers
Cost-effective payer contracts to keep factor expense as low as possible
Shipments to your home or your choice of location
Coordination of at-home nursing services
Healthcare-specific interpreters available in over 180 different languages
All proceeds go to specialized clinical care, training,
and the essential services the HTCs provide to you and your family!
at Home
If you are interested in having a 340B Program provide your factor
and supplies or if you would like additional information, please call
877-246-9520
Hablamos su idioma. Si desea mas información, por favor llame.
HemophiliAction
21
Michigan Researchers Create Stem Cell Lines for
Hemophilia B
Investigators from the University of Michigan (U-M) in Ann
Arbor have created six new embryonic stem cell lines for USbased research. Two of the new lines carry the genetic mutation
linked to hemophilia B, the first of its kind.
Stem cells are unspecialized
cells that can renew themselves
for prolonged periods. They
can also develop into many
different cell types, making them
a potentially renewable source of
replacement cells that could be
used in the future to treat many
conditions. The creation of such
stem cell lines will open the door
to an enhanced understanding
of the origin and progression
of congenital disorders, and
hopefully to new therapies based
on those findings. U-M, which
has been creating stem cells for
more than three years and is a
leader in the field, now has eight
lines available for federally funded researchers nationwide. Access
to embryonic stem cells was first made possible in Michigan in
November 2008 when voters approved a state constitutional
amendment allowing researchers to generate new lines from
unused embryos donated by fertility clinics. Instead of discarding
the embryos, which in some instances carry the genes responsible
for inherited disorders, scientists now have a new approach for
advancing research.
The amendment also led to a partnership between U-M’s
Consortium for Stem Cell Therapies (CSCT) and Detroit-based
Genesis Genetics, leading global
provider of pre-implantation genetic
diagnosis (PGD) testing, which
identifies days-old embryos carrying
disease-causing genetic mutations.
The partnership offers patients the
option of donating embryos that test
positive for a genetic disorder to the
CSCT.
In addition to hemophilia B, U-M
now has lines available to study
a number of conditions such
as Huntington’s disease, a fatal
brain disorder, and hypertrophic
cardiomyopathy, a heart condition
associated with sudden death in
athletes and others. “Our last three
years of work have really begun to pay off, paving the way for
scientists worldwide to make novel discoveries that will benefit
human health in the near future,” said Gary Smith, PhD, who
derived the lines. He is co-director of CSCT.
Source: The Detroit News, June 14, 2012
Investigadores en Michigan Crean una Línea de
Células Madre para Hemofilia B
Investigadores de la Universidad de Michigan (U-M) en Ann
Arbor han creado seis líneas celulares de embrión para investigación
basado en Los E. U. Dos de las nuevas líneas cargan la mutación
genética relacionada con hemofilia B, el primero de su tipo.
Estas células no son especializadas que se puedan renovar por
periodos prolongados. También pueden desarrollarse en otros tipos
de células haciéndose potencialmente un recurso renovable para el
reemplazo de células que se pueden usar en el futro para tratar otras
condiciones. La creación de tal línea madre abre las puertas a un
entendimiento del origen y progreso de enfermedades congéniales, y
puede que a otras terapias basadas en esa información.
U-M,la cual ha creado células madre por más de tres anos en el
líder en esta industria, y ahora tiene ocho líneas disponibles para
recursos fundados federalmente nacionalmente. Acceso a células de
embriones fue posible primero en Michigan en noviembre del 2008
cuando los votantes aprobaron una enmienda estatal constitucional
permitiendo a investigadores a generar líneas de embriones no
usados, y donados por clínicas de fertilidad. En vez de tirar los
embriones, los cuales en unos casos cargaban los genes responsables
por enfermedades heredadas, ahora los científicos tienen una nueva
opción para avanzar la investigación.
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HemophiliAction
La enmienda también llevo a una unión entre U-M del Consorcio
para Terapias de Células Madre (CSCT) y la compañía basada
en Detroit-Genesis Genetics, como líder mundial en la proporción
de diagnósticos de pre-implantación (PGD), el cual identifica
embriones de días los cuales cargan mutaciones de enfermedades
cuando mutaciones genéticas. El acuerdo les ofrece a pacientes una
opción de donar los embriones que salen positivos con enfermedades
genéticas a CSCT.
Adicionalmente a la Hemofilia B. U-M ahora tiene líneas disponibles
para estudiar una variedad de condiciones tales como Huntington’s
Disease, una enfermedad fatal del cerebro, y miocardiopatía
hipertrófico, una condición del corazón asociada con la muerte de
repente de muchos deportistas y otros.
“Nuestros tres años pasados de trabajo empezaron a dar resultados,
formando una vía para científicos mundialmente para hacer
descubrimientos los cuales beneficiaran a la salud humana en el
futuro cercano,” dijo Gary Smith, PhD, quien derivo las líneas. El es
co-director de CSCT.
Recurso: The Detroit News, Junio 14, 2012
Jennifer and Donovan Guerrero,
a mom and son meeting the
challenges of an inhibitor
Share what you know and
change what is possible
We learn from those who have been there before. That’s why
Novo Nordisk created The Changing Possibilities Coalition.
Whether you are dealing with a new diagnosis or have faced
the challenges of hemophilia for years, you can share your
experiences and insights to help others live a better life.
Start by joining The Coalition today at JointheCPcoalition.com.
Changing Possibilities in Hemophilia®
Novo Nordisk Inc., 100 College Road West, Princeton, New Jersey 08540 U.S.A.
Facebook® is a registered trademark of Facebook, Inc.
Changing Possibilities in Hemophilia® is a registered trademark owned by
Novo Nordisk Health Care AG.
© 2011 Novo Nordisk Printed in the U.S.A. 0311-00001987-1 April 2011
¿Qué usted puede recibir de nosotros?
What can you expect from us?
We are here 24 hours a day, 365
a year. Hemophilia doesn’t take a
break and neither do we.
We provide personalized services to
match your family’s unique needs.
We have reimbursement specialists
that track, navigate, and handle all
your insurances issues; one less
thing for you to worry about.
We coordinate nursing services that
come to you, on your schedule.
We offer all factor brands with
supplies delivered on time to your
doorstep.
We are community advocates,
educators, volunteers, and your
child’s mentor.
(877) 276-4248 | www.brothershealthcare.com
Estamos aquí las 24 horas al día,
365 días al año. Hemofilia no toma
descanso, nosotros tampoco.
Nosotros proveemos un servicio
personalizado y único para la
necesidad especial de cada familia.
Tenemos especialistas de rembolso
que se encargan de navegar, lidiar,
y aclarecer todos los problemas y
compilación de la seguranza medica;
otra área en donde no tiene que
preocuparse.
Nosotros coordinamos los
servicios de enfermera(o), en la
cual lo visitarán cuando usted este
disponible.
Ofrecemos todo tipos de factor con
todas las herramientas medicinales
que necesite, directamente
entregado a usted, en sus manos, y
en su casa.
Somos abogados por nuestra
comunidad, educadores, voluntarios,
y hasta un consejero para su hijo(a).
(877) 276-4248 | www.brothershealthcare.com
HemophiliAction
23
Hemophilia Foundation of
Southern California
NONPROFIT
US POSTAGE
PAID
OAKLAND CA
PERMIT NO.3729
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
Hemophilia Foundation of Southern California
2012 Calendar of Events
July 30 – August 4
August 13
September 21-23
October 27
November 8-10
TBD
TBD
Camp Blood Brothers & Sisters - Lake Hughes, CA
LAUSD Nurse Outreach & Training
Family Retreat - Malibu, CA *community only*
Hemophilia Walk, The Rose Bowl Stadium
NHF Annual Convention, Orlando Florida
Christmas Party – Toy Giveaway
Inland Empire, Los Angeles, Northern California & Orange County Regional Events
2013 Calendar of Events
February 9
Family Information Day, Skirball Center
February 27 – March 1
Washington Days – Washington DC, Crystal City Marriott
May 13 - 15
Future Leaders Day – Sacramento, CA
May 15
Legislative Day – Sacramento, CA
October 3 – 5
NHF Annual Convention, Anaheim, CA
July 29 – August 3
Camp Blood Brothers & Sisters, Camp Painted Turtle
• Dates & locations are subject to change
www.hemosocal.org Telephone: (323) 525-0440 Fax: (323) 525-0445
Calendario de la Fundación de Hemofilia del Sur de California
Calendario de Eventos 2012
Julio 30 – Agosto 4
Agosto 13
Septiembre 21-23
Octubre 27
Noviembre 8-10
Sera Determinado
Sera Determinado
Campamento Blood Brothers & Sisters - Lake Hughes, CA
LAUSD Entrenamiento para Enfermeras
Retiro Familiar - Malibu, CA *comunidad solamente*
Caminata de Hemofilia, Estadio The Rose Bowl
Convención Anual de NHF, Orlando Florida
Fiestas Navideñas – Entrega de Juguetes
Inland Empire, Los Angeles, Northern California & Orange Eventos Regionales
Calendario de Eventos 2013
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HemophiliAction
Febrero 9
Día de Información Familiar, Skirball Center
Febrero 27 – Marzo 1
Días de Washington – Washington DC, Crystal City Marriott
Mayo 13 - 15
Día de Lideres del Futuro – Sacramento, CA
Mayo 15
Día Legislativo – Sacramento, CA
Octubre 3 – 5
Convención Anual de NHF, Anaheim, CA
Julio 29 – Agosto 3
Campamento Blood Brothers & Sisters, Camp Painted Turtle
• *Fechas y lugares pueden cambiar- (SD- Sera Determinado)
www.hemosocal.org Teléfono: (323) 525-0440 Fax: (323) 525-0445