HemophiliAction - Hemophilia Foundation of Southern California

HemophiliAction - Hemophilia Foundation of Southern California

HemophiliAction
A publication of the Hemophilia Foundation of Southern California Volume 8 • Issue 2 • Winter 2012
Sunsets to warm your heart
Kids enjoying the sunset
Clouds come floating into my life, no longer to carry rain
or usher storm, but to add color to my sunset sky.
- Rabindranath Tagore
Hemophilia Foundation
of Southern California
6720 Melrose Avenue
Hollywood,CA 90038
Tel: 323-525-0440
Fax: 323-525-0445
[email protected]
www.hemosocal.org
Joshua Porter hosting the Inalex Seminar
Aaron Jr and Sam Diener making new friends
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
Tamara Kato, President
Judy Mangione,
Secretary Jorge Catedral,
Advocacy Chair
Michael Franzen,
Treasurer Dr. Richard Metz,
VP Fundraising
Doris Quon, MD,
Medical Representative
Staff
Linda Corrente, Executive Director
Charles J Cook, Social Worker
Andressa Rogers,
Special Events and Programs Assistant
Kate Compton,
Special Events and Programs 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
Sunsets to warm your heart
The beautiful cover photo was taken by Mickey Price at the
Foundation’s retreat in September. The children forming
friendships and enjoying the beautiful Malibu sunset is a memory
that warms my heart.
to complete your life.
I wish Happy Holidays to you and your family and the healthiest and happiest New Year. Tis
the Season to be grateful and reflect on the past year.
As I reflect on the past year at the Foundation, I am thankful for the tremendous support, the
well-attended events with the opportunity to meet and visit with many of you. I am thankful
for the hard work of the staff and board of directors to toast in the New Year with the
satisfaction of a job well done.
Some of our accomplishments
include our Foundation being
recognized in the National
Hemophilia Foundation magazine,
HemoAware and receiving a
National award at the annual
convention for the Tami WoodLively Collaboration Award of
Distinction. Our efforts were
recognized for collaborating with
the Los Angeles area medical
centers to provide awareness and
training about bleeding disorders.
As you read this newsletter, I hope
you reflect on the good times, the
good friends, and the memories you
have shared at our events. That
is our greatest accomplishment to
connect people with others and
to connect you with resources to
enhance or improve your daily life.
Warmest Regards,
E-mail: [email protected]
Web: www.hemosocal.org
Linda Corrente
Executive Director
HemophiliAction
Linda accepts NHF award
It warms my heart to know there
is a place called community, a
comfortable place where you can
meet and be a family and proud,
if we at the Foundation played a
small role in bringing the bleeding
disorder family together.
Tel: (323) 525-0440
Toll Free: (in CA only)(800) 371-4123
Fax: (323) 525-0445
2
This is my wish for you: Comfort on difficult days, smiles when
sadness intrudes, rainbows to follow the clouds, laughter to kiss
your lips, sunsets to warm your heart, hugs when spirits sag,
beauty for your eyes to see, friendships to brighten your being,
faith so that you can believe, confidence for when you doubt,
courage to know yourself, patience to accept the truth, Love love
HFSC receives National Hemophilia Foundation Award of Program Distinction
Hablando Ejécutivamente
Puestas de Sol para darle calidez a sus corazones
La bella foto del frente fue tomada por Mickey Price en el
Retiro Familiar de la Fundación en septiembre. Los niños
forman amistades y disfrutan las puestas de sol de Malibu son
recuerdos que llenan sus corazones con calidez.
“Este es mi deseo para usted: Consuelo cuando lo necesite,
sonrisas cuando este entre la tristeza, arco iris siguen a las
nubes, y puestas de so para darle calidez a sus corazones,
belleza para que sus ojos vean, amistades para iluminarle,
esperanza para que pueda creer, valor para creer en si mismo,
paciencia para aceptar la verdad, y amor para completar su
vida.
Les deseo Felicidades durante los días festivos a usted y a
sus familias y un Año Nuevo lleno de salud y felicidad. Es la
temporada para dar gracias y reflejar el pasado.
Mientras hago reflexión sobre el año pasado en la Fundación,
estoy agradecida por el tremendo apoyo, los eventos con tanta
participación que nos dan la oportunidad de conocer y visitar
con muchos de ustedes. Estoy agradecida de todo el trabajo de
nuestros empleados y la Junta Directiva y brindar el año nuevo
con satisfacción y un buen trabajo.
la revista HemoAware y recibir un premio Anual en la
convención por el Tami Wood-Lively Premio de Colaboración
de Distinción. Nuestros esfuerzos fueron reconocidos por la
colaboración con los centros médicos de Los Angeles para
proveer información y entrenamiento sobre enfermedades
sanguíneas.
Mientras lee esta revista, espero que usted también refleje en
los Buenos momentos y los Buenos amigos y recuerdos que
ha compartido en nuestros eventos. Este es nuestro éxito más
grande, para conectar con personas y conectarlos con recursos
para mejorar sus vidas.
Me llena el corazón saber que hay un lugar llamado comunidad,
y que es un lugar cómodo donde puede conocer y ser familia y
estar orgullosos de de que en la Fundación tuvimos algo
pequeño en unir a la familia con enfermedades sanguíneas.
Con Cariño,
Linda Corrente
Directora Ejecutiva
Algunos de nuestros éxitos incluyen la Fundación siendo
reconocida por la Fundación Nacional de Hemofilia por
Southern California Hemophilia Education Day
A day for patients and their families and siblings to get together to talk and
learn about hemophilia
When:
Where:
RSVP:
Five Tracks:
Photostock/feedigitalphotos.net
Saturday, January 12, 2013
8:30 am – 4:00 pm
Registration at 7:30 – 8:15 am
JW Marriott Hotel
800 West Olympic Boulevard
Los Angeles, CA 90015
323-361-6465 or
[email protected]
Adults with hemophilia
Caregivers
Significant others
Teens, age 13 and older
Siblings, age 10 and older
* Childcare will be provided
Sponsored by the Hemophilia Treatment Center 340B programs at:
HemophiliAction
3
2012 Donors
THANK YOU FOR YOUR GENEROSITY
“Real generosity toward the future lies in giving all to the present.”Albert Camus
Diamond Sponsor
($80,000 & Above)
Novo Nordisk
Titanium Sponsor
($50,000 - $79,999)
Baxter BioScience
Platinum Sponsor
($25,000 - $49,000)
Bayer Healthcare
Gold Sponsor
($20,000 - $24,999)
CSL Behring
Silver Sponsor
($15,000 - $19,999)
Pfizer
Bronze Sponsors
($10,000 - $14,999)
Biogen Idec Hemophilia
Catherine Leone & Keith
Lehmann
Red Chip Investment Group
Copper Sponsors
($5,000 - $9,999)
Bank of America
Brothers Healthcare
CVS Caremark
Grifols USA
Tal Incorporated
$1,000 - $4,999
Aida & Philip Leone
Baxter
BaxterInternational
International
BioRX
Children’s Hospital Los
Angeles
Coram Hemophilia Services
Darlene Whitney
Factor Support Network
Guided Alliance Healthcare
Services
Homecare For the Cure
Kedrion
4
HemophiliAction
National Cornerstone
Healthcare
Octapharma
Premier Hemophilia Care
Rudi and Berta Shulte Angels
Rudi Shulte Family
Foundation
Walgreens Hemophilia
Services
$500 - $999
Bertha A.T. Guerrero
BioScrip
CF Marketing
Hueneme Family Pharmacy
Joan Parker
Joe Pugliese
Richard & Jane Metz
Richard Hearn
Sempra Energy Community
Relations
Stephen Trentacoste
Shawn Simmons
The 6740 LLC
$100 - $499
Allstate Giving
Alan Taylor
Amanda Ewing
Amy Shelton
Angela Yanez
Anna Mellor
Becky Cleavenger
Brenda Merino
Brinker International
Calvin R. Scott
Camille Lewis
Cardinal Sales
Cheryle Robbins
Christine Sauer
Christine T. Mathews
Cindy Hovarth
Clem Adkins
Community Health Charities
Craig Tupy
Daniel Ibarra
David G. Jamieson
David Hoag
Deborah Joslyn
Deborah Maust
Dixie Olson
DJ Blanchette
Dominick Pizzutello
Donna Pett
Ed Meenan
Eddy Rosales
Edmund Merino
Edward L. Allum
Elizabeth Kneier
Ellen J. S. Greenberg
Employees Community Fund
of Boeing California
Eugene Galen
Federick Clough
Frank & Vivian Stefkovich
Gavin DiMundo
George Giffen
Glenn Miller
Gwyneth Pett
Harriet H. Plunkett
Heather F. Ney
Helen Meyer
Hester Hell
Howard C. Lim
Ian Armstrong
James Berliner
James Hardeman
Jane E. Martinez
Jason Hayes
Jeff Gentzler
Jerman Velasquez
Jerry Lee
Jesus Sanchez
Jillian Valdivieso
Joan Shaw
John A. Mancina
Johnny Ong
Joseph Sirgy
Karen Lossberg
Karen Sue Meier
Katee Trinh
Kenneth Goebel
Kevin Shaughnessy
Laura Yocom
Lauren Salinas
Linda Ostoja
Lois McKeown
Luisa Sanchez
M. Hagen
Marcos Navas
Margaret Pett
Maria Medranda
Maria Servello
Mark R. Gander
Mary Betzler
Mary Compton
Mary J. Wallis
2012 In Memory & In
of Donor Recognition
InHonor
Memory
Reconocimiento de Donanes 2012
Russell Gibbons
Nick, Phil, and Bobbie Green
2012 In
MemoryListed
& In are
Honor
Donor
Recognition
Donations
fromofJuly
– November
Reconocimiento
de Donanes 2012
Bertold and Margarete
Schwall
G. Rabaey Green
Donations Listed are from July – November
Verne Hays
Fran and Don Pearson
Theresa Hays-Horner
In Memory
Russell Gibbons
Loren Redmond
In Memory
Bertold and Margarete Schwall
PatriciaGibbons
Carter
Russell
Verne Hays
Bertold and Margarete Schwall
Theresa Hays-Horner
Verne Hays
Loren Redmond
Theresa Hays-Horner
Patricia Carter
Loren Redmond
Mark and Renee Gander
Polly and Joel Lewitz
Nick, Phil, and Bobbie Green
G. Rabaey Green
Michael
Schmidt
Nick,
Phil,Lawrence
and Bobbie
Green
Fran and Don Pearson
Mary
Jane Wallis
G.
Rabaey
Green
Mark and Renee Gander
Fran
Pollyand
andDon
Joel Pearson
Lewitz
Mark and Renee Gander
Polly Lawrence
and Joel Lewitz
Michael
Schmidt
Patricia Carter
In Honor
Mary Jane Wallis
Michael Lawrence Schmidt
Erik Johnson
Mary Jane Wallis
G. Beverly Bergmann
Bernd Givon
In Honor
Theresa Hays-Horner
Rich Horner
Erik Johnson
In Honor
G. Beverly Bergmann
Erik Johnson
Bernd Givon
G. Beverly Bergmann
Theresa Hays-Horner
Bernd
Givon
Rich Horner
Hemophilia Care at Home
• Local Pharmacies
• Nationwide Services
• Hemophilia-Trained
Nurses and Staff
Theresa Hays-Horner
• Patient SupportRich
24/7
Horner
For comprehensive services
Call: 866-436-4376 or
Fax: 888-688-3593
En Español: 800-456-1923
WalgreensHomeCare.com/bleedingdisorders
HemophiliAction
5
MORE THAN JUST ANOTHER
Making a change in the world
begins by making a difference in the community.
Apply to be an intern through the Bayer Hemophilia
Leadership Development Program and begin to learn
how to be the change YOU want to see in the world.
Students enrolled full-time in college who are
touched by hemophilia can apply now for the
opportunity to:
• Engage in leadership training and hands-on
business projects
• Learn how to support the hemophilia community as a
young professional
Apply now for an eight-week, paid internship at
Bayer’s U.S. headquarters in New Jersey.
In addition to working directly with leaders at Bayer,
selected interns will:
• Work directly with hemophilia organizations in the
area to learn more about making an impact as a
business professional
Now is your chance to learn how to be the change
you want in the hemophilia community. Visit
www.livingbeyondhemophilia.com/intern
to learn more and download an application.
A P P L I C AT I O N S A R E D U E N O L AT E R T H A N
Friday, February 8, 2013 at 11:59 p.m. ET
• Meet with healthcare public policy professionals to see
how effective advocacy relations impacts legislative
decisions
Start shaping your future and your community!
PAS S I O N + A DVO CACY + R EA L WO R L D EX P E R I E N C E
Bayer, the Bayer Cross, and Living Beyond Hemophilia are registered trademarks of Bayer.
© 2012 Bayer HealthCare Pharmaceuticals, inc. Printed USA 10/12 KN10001012A
BHLDP_ad_FULLPAGE_10412.indd 1
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HemophiliAction
10/11/12 11:19 AM
Camp Out Loud!
Laugh longer, dream bigger, live louder… Camp Out Loud!
For the ninth consecutive summer The Hemophilia Foundation
of Southern California and The Painted Turtle partnered to
bring children, ages 7-16, with Hemophilia and von Willebrand
Disease together for a fun-filled week at camp. This summer
96 campers, including 6 LITs (Leaders-in-Training), were
encouraged to “Camp Out Loud” and live every moment of
camp to the fullest. Every camper took this message to heart as
they conquered the ropes course, went boating and fishing, rode
horses, constructed a woodshop project, performed at Stage
Night, made many friends, and together we also celebrated 3
campers who earned their Big Stick Awards for self-infusing
for the first time. Camp offers an opportunity for children to
develop confidence and independence and while they “Camp
Out Loud” at The Painted Turtle, they also take their camp
experience and increased self-esteem and live out loud every
day of their lives.
Thanks to all of the campers, families, volunteers, and donors
who made this incredible week possible.
Camp donors, Catherine Leone and Keith Lehman visit summer camp
¡Campamento En Voz Alta!
¡Ríase más, suene mas, viva mejor…Acampar en Voz Alta! Por
el noveno año consecutivo el campamento de La Fundación
de Hemofilia del Sur de California y Painted Turtle se unieron
para traerle a niños y niñas de edades 7-16 con Hemofilia y
Von Willebrand juntos para divertirse durante una semana del
campamento. Este verano 96 campistas incluyendo a 6 LIT’s
(Lideres en Entrenamiento), fueron animados a “Acampar en
Voz Alta” y vivir cada momento del campamento como el mejor
de sus vidas. Cada campista tomo este mensaje y conquistaron las
cuerdas, se montaron en botes y pescaron, montaron a caballo,
construyeron un proyecto de madera, y presentaron en la Noche
de Escena, e hicieron amigos y juntos también celebraron a 3
campistas que aprendieron y se ganaron el premio de “Big Stick
Award” por hacer su propia infusión. El campamento ofreció
una oportunidad para los niños y desarrollo de confianza e
independencia mientras “Acampaban en Voz Alta” en Painted
Turtle, también llevan su experiencia del campamento y
aumentaron el auto-estima y disfrutan cada día de sus vidas.
Gracias a todos los campistas, familias, voluntarios, y donantes
que hicieron esta semana increíble.
HemophiliAction
7
HEMOPHILIA
COUNCIL OF
CALIFORNIA
Vo l u m e I V
Issue 3
Advocacy Update
September 2012
HCC Sponsored Bill on Standards
Is Now California Law!
HCC Summit Held in Sonoma in August
HCC was pleased to host the 2nd Annual Bleeding Disorders
Summit in Sonoma, CA in early August to bring together
We are pleased to report that our HCC
experts from NHF, Hemophilia Federation of America, HTC’s,
sponsored bill to create standards for the delivery of
industry, and others to plan for 2013 and beyond. It was a
clotting factor in the home setting was signed into law
successful gathering where work groups were formed to tackle
on July 10, 2012. AB 389/Mitchell, Chapter 75, Statutes
the many challenges facing the community in late 2012 and
of 2012 was a major victory for HCC and the bleeding
into 2013. Hot topics included:
disorders community in CA. The bill takes effect on January 1. Changes to Medi-Cal Managed Care in CA, including the
1, 2013 and HCC will spend time in 2013 ensuring full
mandatory enrollment of the Seniors and Persons with Disimplementation of AB 389. The standards include many of abilities into Managed Care which impacts many of the GHPP
the provisions from the NHF MASAC Guidelines including patients;
time frames for emergency and non emergency delivery
2. Discussion of how an “opt out” could apply to GHPP paand access to a full range of products. Thanks to all of our tients per CA’s Title 22 Regulations;
supporters and friends who helped make this important
3. Implementation of the Affordable Care Act in CA and coormeasure State law in California. To obtain a copy of the
dinating efforts with the new CA Health Benefits Exchange;
statute go to www.leginfo.ca.gov, click on “bill information” 4. Access to needed services under current programs like CCS
and enter AB 389 .
and GHPP and how that may or may not change with full ACA
-By Terri Cowger Hill, HCC Legislative Advocate
implementation.
California Coastal Ride for Hemophilia 2012
by Brian T aylor
Special Thanks
to our 2012
Sponsors
Baxter
Novo
Bayer
CSL Behring
Walgreens
Octapharma
Accredo
Red Chip
Biogen Idec
Grifols
Amgen
Two Hubsn
Now in its eleventh annual run, the
California Coastal Ride for Hemophilia,
started, by tradition, in San Francisco on
Sunday, August 19 and continued for
the next seven days down the coast, to
complete the 500-mile journey to San
Diego on Saturday, August 20. With
stops in Santa Cruz, Big Sur, San Simeon,
Lompoc, Santa Barbara, and Dana Point,
the cyclists braved fog, drizzle, sun, wind,
and of course, drivers. All 23 cyclists finished in San Diego on their mission to support
all four hemophilia chapters and the Hemophilia Council of California, and to raise
awareness of bleeding disorders. A homecoming picnic in Mission Bay, hosted by the
Hemophilia Association of San Diego County, celebrated their success.
This year, the California Coastal Ride had its first participant with Von Willebrand
Disease. Jennifer Koles joined the team as one of only a few women who have
completed the challenge, not to mention one of a few that have a bleeding disorder. Tim
Stowers, affected by hemophilia, participated for the third time in the ride, and fathers
of children with hemophilia, Ian Corona, Burt Lo, Paul Schwarz, and Jeff Messerly also
conquered the coast. The support crew, comprised of fourteen wonderful volunteers kept
at the riders’ sides the whole week and provided food, aid, equipment, and continuous
cheerleading when the hills looked like they would never end. Congratulations to all the
cyclists and thank you to all the volunteers!
The Hemophilia Council of California exists to provide public information and to coordinate activities which will promote and ensure the welfare of all California organizations representing persons with
coagulation disorders and which will directly or indirectly improve the quality of life for all persons with coagulation disorders and their families in the state of California.
8
HemophiliAction
HEMOPHILIA
COUNCIL OF
CALIFORNIA
volumen IV
edición 3
Promoción de actualización
15 de septiembre 2012
Proyecto de ley patrocinado HCC sobre
las normas ya es Ley de California!
Tenemos el agrado de informar que nuestro proyecto
de ley patrocinado por HCC para crear normas para la
entrega de factor de coagulación al hogar se convirtió en
ley el 10 de julio de 2012. AB 389/Mitchell, Capítulo 75,
Estatutos del 2012 fue una gran victoria para el HCC y la
comunidad de trastornos de la coagulación en California.
El proyecto de ley entra en vigor el 1 de enero de 2013 y el
HCC pasará tiempo en el año 2013 en la completacionde
de AB 389. Los estándares incluyen muchas de las disposiciones de las Directrices NHF MASAC, incluyendo plazos
para la entrega de emergencia y la entrega sin emergencia
y el acceso a una gama completa de productos. Gracias
a todos nuestros seguidores y amigos que ayudaron a que
esta ley importante medida estatal en California. Para obtener una copia de la ley vaya a www.leginfo.ca.gov, haga
clic en “Información de cuenta” e introduce AB 389.
Por La Abogada Legislativa del HCC Terri Cowger Hill
Cumbre de HCC Celebrada en Sonoma
HCC se complace en poner la segunda Cumbre Anual de
Trastornos de Sangrado en Sonoma, California a principios de
agosto para reunir a expertos de NHF, Federacion de Hemofilia
de America, de HTC, la industria y otros para planear para el
2013 y más allá. Fue una reunión exitosa donde se formaron
grupos de trabajo para hacer frente a los numerosos desafíos
que enfrenta la comunidad a finales de 2012 y en 2013. Temas
incluidos:
1. Los cambios en Medi-Cal Managed Care en California,
incluyendo el registro obligatorio de las Personas Mayores y
Personas con Discapacidad en atención médica que afecta a
muchos de los pacientes de GHPP;
2. La discusión de cómo un “opt out” podría aplicarse a
pacientes de GHPP por Título CA 22 Reglamento;
3. Aplicación de la Ley de Asistencia Asequible en CA y
coordinando esfuerzos con la nueva ley de CA de Beneficios de
Cambio de Salud;
4. El acceso a los servicios necesarios en los programas
actuales, como CCS y GHPP y cómo eso puede o no cambiar
con la implementación completa del ACA..
Carrera Costal de Hemofilia en California por Brian Taylor
Agradeciamiento
especial a nuestros patrocinadores de 2012
Baxter
NOVO
Bayer
CSL Behring
Walgreens
Octapharma
Accredo
Red Chip
Biogen Idec
Grifols
Amgen
Two Hubsn
Ahora en su XI recorrido anual,
el Paseo de la Costa de California para
la Hemofilia, comenzó, por tradición, en
San Francisco el domingo, 19 de agosto y
continuó durante los siguientes siete días
por la costa, para completar el viaje de 500
millas a San Diego el sábado 20 de agosto.
Con paradas en Santa Cruz, Big Sur, San
Simeon, Lompoc, Santa Bárbara, y Dana
Point, los ciclistas desafiaron la niebla, la
llovizna, el sol, el viento, y por supuesto,
los conductores. Los 23 ciclistas terminaron en San Diego en su misión de apoyar a los
cuatro capítulos de la hemofilia y el Concilio de Hemofilia de California, y aumentar el
concimiento de los desordenes de sangre. Un picnic en Mission Bay, organizado por la
Asociación de Hemofilia del Condado de San Diego, celebraron su éxito.
Este año, el Paseo de la Costa de California tuvo su primer participante con la
enfermedad de Von Willebrand. Jennifer Koles se unió al equipo como una de las pocas
mujeres que han completado el viaje, y tambien fue unas de los pocos que tiene una
enfermedad de sangrado. Tim Stowers, afectado por la hemofilia, participó por tercera
vez en el viaje, y los padres de niños con hemofilia, Ian Corona, Burt Lo, Paul Schwarz,
y Jeff Messerly también conquistaron la costa. El equipo de apoyo, integrado por
catorce voluntarios maravillosos estuvieron a los lados de los ciclistas toda la semana y
proporcionaron alimentos, ayuda, y fueron el equipo de porristas continua cuando las
colinas parecían que nunca iba a terminar. Felicitaciones a todos los ciclistas y gracias a
todos los voluntarios!! n
El concilio para la hemofilia en california existe para proveer información publica y para coordinar actividades las cuales promoverán y aseguraran el bienestar de todas las organizaciones de California que representan
a personas con enfermedades de coagulación y las cuales directamente o indirectamente mejoraran la calidad de vida para todas las personas con enfermedad de coagulación y sus familias en el estado de California.
HemophiliAction
9
Families Escape to Malibu for Weekend of Smores and Smiles
The family retreat took place over a beautiful weekend in California
complete with sunshine and fun! All of the families who participated
brought home memories that will last a lifetime. Here’s a quick recap of all
the happenings from September 21-23 at Camp Hess Kramer in Malibu.
The arrival gate opened and families started pouring in from all across
Southern California to sign-in and start their weekend seeing old friends
and making new ones. Once everyone settled into their cabins, everyone
met in the dining room for dinner. Our HFSC Social Worker, CJ Cook,
welcomed everyone with a wonderful speech and went over the agenda
for the weekend. After dinner, the kids headed to Center Field to make
bottle rockets with The Painted Turtle. This was one of the highlights
of the weekend and all the kids (and many of the parents, too) enjoyed
decorating their rockets and seeing how far they could launch them
into the air. Right next door, the parents tested their knowledge with a
Bleeding Disorders Jeopardy game and many participated in a breakout
session for all of the regions including Northern, Inland Empire, Orange
County, and Los Angeles. The first evening came to a close with smores
and a sing-a-long by the campfire.
Saturday started bright and early with breakfast and signing-up for the
day’s activities. Parents participated in workshop sessions with Inalex
Communications while the kids picked up some new tennis skills from
Prince Professional sponsored player, Scott Burton. After the morning’s
excitement everyone gathered for lunch outside and basked in the sunny,
beautiful day. The afternoon was filled with a rousing game of kickball,
wall climbing and a ropes course with Fulcrum Adventures, Arts and
Crafts, and more workshop sessions with Inalex Communications. Once
these fun events ended, families gathered together to participate in either
Family Retreat 2012 in Malibu
Andressa Rogers and Kaelee Price checking in guests
10
HemophiliAction
Dads in Action or Yoga Hour. Dads in Action met to discuss sports and
bleeding disorders with special guests, Ryan Harty and Phil Harty. The
father son duo spoke about Ryan training to be an Olympic Swimmer
and the impact Hemophilia A and Type 2N Von Willebrand’s Disease
have on training and sports in general. Ryan swims for Greenwood
Memorial Swim Club, a USA Swimming team, located in Gardner, MA.
While this was taking place, many of the ladies at camp learned Yoga with
Jennifer Banando and had a relaxing time stretching and strengthening
their muscles. The final part of the afternoon was spent doing improv,
stand-up comedy and rehearsing talent show skills with The Art of
Elysium. Everyone had worked up an appetite from all the activities of
the day and headed for the Dining Hall. After dinner, we saw some of
the amazing talents of our group at the Hemophilia’s Got Talent Show.
There was singing, dancing, joke telling and so much more. The audience
cheered on everyone who participated and showed off their skills.
The next day it was time to say goodbye. Everyone met for breakfast
to say goodbye to all the new friends they had made. The cabins slowly
started to empty as each family packed up and headed home on Sunday.
Thank you to everyone who helped to make the 2012 Family Retreat a
smashing success! Thank you to our sponsors Novo Nordisk, Kedrion,
and Biogen Idec who help make the retreat
possible. Thank you to Betsy Cook, Program Chair and Judy Magione,
Secretary, Board of Directors, and all of our volunteers, who donated
their time and energy to keep the retreat running smoothly. We hope
to see everyone again next year for another fun-filled Family Retreat
adventure!
Julie Irvin from Kedrion and Bernard Glynn from Grifols with community members at the Sponsor Lunch
Dads in Action with guest speaker, Phil and Ryan Hardy. Ryan is training to be an Olympic swimmer
Escape de Familias a Malibu para un Fin de Semana con
Sonrisas y Galletas.
El retiro familiar tomo lugar en durante un hermoso fin de semana en
California ¡completo con rayos solares y diversión! Todas las familias
que participaron trajeron recuerdos a sus hogares que duraran para
toda la vida. Aquí está un resumen de las actividades de septiembre 2123 del campamento Hess Kramer en Malibu.
Las puertas abrieron mientras las familias empezaron a llegar de todo
el Sur de California para registrarse y empezar a ver amigos del pasado
y hacer amistades nuevas. Ya que todos llegaron y se acomodaron en
la cabaña, todos se reunieron para cenar. Nuestro trabajador social
CJ Cook les dio la bienvenida a todos con una gran presentación
que cubrió la agenda del fin de semana. Después de la cena, los
niños pasaron a Center Field para hacer cohetes de botellas de agua
con Painted Turtle. Este fue una de los mejores momentos del fin de
semana para los niños (y para muchos padres también.) disfrutaron
decorando estos cohetes y viendo que tan lejos los enviaban. Cerca
a ellos, los padres jugaron Jeopardy para examinar su conocimiento
sobre Enfermedades Sanguíneas y muchos participaron en la sesión
para todas las regiones incluyendo el Norte, el Inland Empire y el
Condado de Orange y Los Angeles. La primera noche termino con
galletas llamadas smores y cantando alrededor de la fogata.
Quality
Safety
Todos tenían hambre después de todas las actividades del día y
pasaron a la sala de cena. Después de la cena, vimos gran talento
de nuestro grupo en Hemofílicos Tienen Talento. Luego se canto,
bailaron, contaron chistes y mucho más. La audiencia animo a todos
los participantes y demostraron sus talentos.
El próximo día era tiempo de despedida. Todos se reunieron para
el desayuno y despedida de todos los amigos y amigas. Las cabañas
despaciosamente empezaron a verse vacías mientras las familias
empacaban y salían en camino a sus hogares.
¡Gracias a todos los que ayudaron en hacer el Retiro Familiar del 2012
un Exito! Gracias a nuestros patrocinadores Novo Nordisk, Kedrion,
y Biogen Idec quienes ayudaron en hacer el retiro posible. Gracias
a Betsy Cook, Líder del Programa y Judy Magione, Secretaria, La
Junta Directiva y todos los voluntarios quienes donaron su tiempo y
energía para que el retiro fuera un éxito incluyendo a Alicia Horta,
Vanessa Sandoval, Kevin Shaughnessy, and Matti Van.
At CSL Behring
Innovation leads the way
Committed to making a difference in patients’ lives
Therapies
Patients
Innovation
El sábado empezó temprano con desayuno e inscripciones de las
actividades del día. Padres participaron en talleres con sesiones con
Inalex Communications mientras los niños jugaron y aprendieron tenis
con el jugador Profesional Scott Burton. Después de las actividades
de la mañana, todos se reunieron para almorzar afuera y disfrutaron
del sol y del hermoso día. La tarde fue llena con un juego de pateo
de pelota, trepar la pared y las cuerdas con Fulcrum Adventures,
Artes y artesanías con voluntaria Alicia Horta, y más talleres con
Inalex Communications. Ya que estos eventos terminaron las familias
se reunieron para participar en Yoga o Padres en Acción. El grupo
Padres en Acción se reunió para hablar sobre deportes y enfermedades
sanguíneas con invitados especiales, Ryan Harty y Phil Harty. El dúo
de Padre e Hijo hablaron somre el entrenamiento para ser un Nadador
de los Juegos Olimpicos y el impacto que Hemofilia A y Tipo 2N Von
Willebrand tiene en el entrenamiento y deportes en general. Ryan nada
para Greenwood Memorial Swim Club, y el equipo de Natacion de
E.U localizado en Gardner, MA. Mientras esto estaba tomando lugar,
muchas de las mujeres del campamento aprendieron sobre Yoga con
Jennifer y se relajaron al fortalecer y estirar los músculos. La parte
final de la tarde se paso practicando para show de talento con Art de
Elysium.
As the industry leader in coagulation therapies, CSL Behring
offers the most extensive portfolio of coagulation products
for patients with factor deficiencies, including FI, FVIII, FIX,
FXIII, and von Willebrand factor. And we continue to broaden
our efforts with a number of recombinant factor therapies in
development, including rFVIII, rFVIIa, rFIX, and rVWF.
Life
For more information about our factor products for
hemophilia, von Willebrand disease, and other rare bleeding
disorders, or to learn about our innovative patient programs,
please visit www.cslbehring.com or call consumer affairs at
1-888-508-6978.
©2012 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA
www.CSLBehring-us.com MTL07-12-0001 7/2012
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Retreat (continued)
Practicing Tennis
Playing tennis
Tennis Lesson with Scott Burton
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Scott Burton and Isaiah Simons, Tennis Instructors
Tennis Instructors, Scott Burton and Isaiah Simons, with students
Retreat (continued)
Seth Arimura starting the Fulcrum Ropes Course
Wendy Whorisky, Randy DeSantis from Factor Support Network, Judy Mangione, and Dan Goodwin from Novo
Nordisk enjoying the Sponsor Lunch
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We Splished and Splashed and
Kicked Off our 4th Walk Season
Southern California Hemophilia Walk
We kick started the Walk season with a splash! The lazy, hazy, crazy-and hot--day of summer was no match for the crystal blue water pool
and the tasty drinks and appetizers offered by our beloved friend and
hostess, Maureen Lenny.
Registered team members and event sponsors gathered for a cocktail
reception by the pool to talk Walk, set up goals and exchange fundraising
experiences. Guests bonded over fun games that included wine ring
toss and hemo trivia. Patricia Medranda, Awards Chair, announced the
new awards categories for this year’s event, while Linda Corrente and
Andressa Rogers led the Q&A session.
Dr. Cindy Bailey, Doctor of Physical Therapy at Los Angeles
Orthopaedic Hospital and a longtime friend of the foundation, joined
the reception to talk about the importance of exercise and fitness. She
engaged all participants in quick warm up exercises and answered
questions about workout routines and healthy eating habits.
We all left inspired and energized to fundraise for our cause after an
exciting night of fun, fundraising and good laughs.
Volunteers cheering on the walk teams
Team Spirit photos
Volunteers cheering on the walk teams
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Team HF Healthcare Live Love Walk
Team Nuno
Matti Van, Dave Pett, and Greyson from Team GaGa for Greyson taking the
prize for Top Community Team Fundraiser
Team Jason
Team Spirit Prevails at the 4th Annual
Southern California Hemophilia Walk
The 4th annual Southern California Hemophilia Walk was a smashing success. This year’s event took place at The Rose Bowl in Pasadena on October
27, 2012.
Thank you to everyone who was a part of the 2012 Southern California
Hemophilia Walk. With your hard work and dedication, we exceeded our
fundraising goal and raised a total of $79,638!
The beautiful Saturday started early with volunteers and sponsors helping
to set-up booths and fill the walk route with balloons. Once everything was
in place, teams and individuals started pouring in from all over Southern
California ready to take on the 5k challenge and walk to raise funds and
awareness for hemophilia and other bleeding disorders. All of the teams
worked hard to prepare for the walk during the months leading up to the
end of October. All of their hard work paid off and the Hemophilia Walk
Goal Thermometer reached the top as the final donations came rolling in.
We would like to recognize our Team Captains who did an excellent job motivating their teams and fundraising until the very end: Raul Ibarra (Team
Raul), Lisa Pullens (City of Hope Roadrunners), Bernard Glynn (Team
Grifols), Shauna Criner (No Needles), Adrienne Castro (Team Alex and
Kylan), Logan Gutierrez (Logan), Leslie Shimasaki-Kung (Team Shimasaki), Eric Macias (Team Isaac), Elva Tarin (Delko Louis Garcia), Niccole
Reiner (Love for Lucas), Cheryl Riven (Team Jason), Fernando Alcantara
(Team Fernando), Dr. Richard Metz (Ninja Stars), Clem Adkins (Baxter
Western Warriors), CJ Cook (High Desert Turtles), Kate Compton (Hipsters for Hemophilia), Edmund Merino (Team Making it Clot), Patricia
Medranda (BioRx Bleeders), Robin Cull (CVS Caremark Hemo Heroes),
Karen Wyatt (Coleman/Scott and Helpline Youth Counseling), Michelle
Dotson (Baxter TO Globe Clotters), Michele Borowsky (Cole Train), Karen Meier (Meier Family), Amanda Long (Team Long), Jada Nuno (Team
Nuno), Denise Adamson- Brown (Baxter Westlakers), Jennifer Duncan
(Baxter LA), Jo Anna Wright (Team Nathan), Valinda Linarez (Team Julian), Scott Carthey (Brothers Healthcare), Matti Vann (GaGa for Greyson), Dr. Doris Quon (LA Orthopaedic HTC), Andrea Sczesny (Pulse of
Apu), Michael Franzen (Charlie’s Angels), Shawn Guy (Walgreens Team:
Hemophilia Helping Hands), Carmen Navarro (Hemo Feel Ya), Norma
Rodriguez (Benjamin), Linda Corrente (Linda’s Party Walkers), Jennifer Escobedo (Team Escobedo), Richard Aguilar (NCHS Hemogoblins),
Iveth Moz (Peyton’s Team), Zabela Klyshevich (Baxter Westlake Regulatory Trailblazers), Karen Arrieta (Cruisers for Bruisers), Marisol Medina
(Jumping Monkeys), Stephanie LaVasseur-Karpati (Team Karpati), Angie
Yanez (Accredo Friends), Jacqueline Ceja (Team Matthew), Ruby Enriquez (PHC), Lauren Klein (Team Octapharma), Maria Solis (HF Healthcare Live Love Walk), and Miles Cole (Hemo Homies).
Everyone gathered in the Court of Champions to mingle and visit the sponsor booths. A welcome speech was given by Joe Kleiber, NHF Senior Vice
President for Chapter Services, followed by the Baxter Check Presentation
with Clem Adkins and a Volunteer Recognition by Keely King and the Baxter Volunteers. After the speeches, Aaron Mitchell from Crossfit Phenom
led all of our teams in a warm-up session and got everyone pumped up to
start the walk.
Over 55 teams were present and 836 walkers lined up at the Start Line
to complete the Rose Bowl Loop. Evan Borstein led the walk around and
through the stadium while flying the Southern California Hemophilia Foundation Flag. Cheerleaders kept spirits high and volunteers handed out water
along the route to keep everyone cooled off. The 5k came to an end as all of
the teams made the fifth and final lap through The Rose Bowl and collected
their Finish Line Medals.
An awards ceremony followed the Hemophilia Walk and Linda Corrente,
Executive Director of the Southern California Hemophilia Foundation,
announced the winners. Top Community Team Fundraiser went to Team
GaGa for Greyson who raised $7,610.00 and Top Corporate Team Fundraiser went to Baxter who raised $12,916.00. The Top Individual Fundraiser was Michael Franzen from Team Charlie’s Angels who raised $4,345.00.
Most Creative T-Shirt Design went to Team Delko Louis Garcia and Craziest Team Hairstyle went to Team Alex and Kylan.
Thank you to all our Teams, Team Captains, Sponsors, Individuals, Donors,
and Volunteers for your support and generosity. You all made the 2012 Hemophilia Walk a success and we can’t wait to do it again next year.
Making new friends
Aaron Mitchell, Crossfit Phenom
Team Accredo Friends completing lap 3
Teams walking through the Rose Bowl
Two GaGa for Greyson Team Members
Karen Wyatt walking with Team Coleman/Scott and
Helpline Youth Counseling
Team Jason
Walking for Team Brothers Healthcare
Team Nathan
Team Julian
Team Escobedo pausing for a photo op
Team GaGa for Greyson having a laugh
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Espiritu de los Equipos Continua en la Cuarta
Caminata del Sur de California
La cuarta caminata del Sur de California fue un gran éxito. Este ano tomo
lugar en el Rose Bowl de Pasadena en Octubre 27.2012.
El bello sábado empezó temprano con voluntarios y patrocinadores ayudando
en arreglar las mesas y llenar la ruta con globos. Ya que todo estaba en su
lugar, los equipos e individuos empezaron a llegar de todo el Sur de California
listos para empezar la caminata de 5K para recolectar fondos y educar sobre
hemofilia y otras enfermedades sanguíneas. Todos los equipos trabajaron
mucho para prepararse para la caminata durante los meses antes del final de
octubre. Todo su trabajo fue un éxito y la Caminata de Hemofilia llego a lo
más alto del termómetro de la meta cuando las ultimas donaciones empezaron
a llegar.
Todos se reunieron en el ara de Campeones para convivir y visitar las
mesas de patrocinadores. Una bienvenida fue hecha por Je Kleiber, NHF
Vicepresidente de Servicios y seguida por la presentación del cheque de
donación de Baxter, presentado por Clem Adkins y Reconocimiento de
Voluntarios por Keely King y los Voluntarios de Baxter. Después de las
presentaciones, Aaron Mitchell de Crossfit Phenom fue líder de nuestro
equipo de caminantes para calentamiento y preparo a todos para empezar
la caminata.
Más de 55 equipos fueron presentes y 836 caminantes empezaron en la línea
para completar la vuelta del Rose Bowl. Evan Borstein empezó como líder
alrededor de la caminata y a través del estadio mientras volaba la bandera de la
Fundación de Hemofilia del Sur de California. Los animadores mantuvieron
los espíritus altos y pasaron pasaron agua en la ruta para mantener a todos
frescos. Los 5k llego al final todos los equipos hicieron las cinco vueltas
alrededor del Rose Bowl y colectaron las medallas al final de la línea.
Una ceremonia de premios siguió la Caminata de Hemofilia y la Directora de
la Fundación Linda Corrente, quien anuncio a los ganadores. El grupo que
recolecto más fondos de la comunidad fue GaGa por Greyson quien recolecto
$7,610.00 y el Grupo de Corporaciones que recolecto más fondos fue Baxter
quien recolecto $12,916.00. EL individuo que recolecto más fondos fue
Michael Franzen del equipo Charlie’s Angels quien recolecto $4,345.00 La
camiseta más creativa fue hecha por Delko Louis Garcia y el estilo de pelo
más loco fue al Equipo Alex y Kylan
Gracias a todos que tomaron parte de la Caminata de Hemofilia del Sur
de California. Con sus esfuerzos y dedicación pudimos excedir la meta de
recolección a un total de $79,638!
Queremos reconocer a los Capitanes de los Equipos por hacer un gran trabajo
en motivar a sus equipos y recolectar hasta el final: Raul Ibarra (Team Raul),
Lisa Pullens (City of Hope Roadrunners), Bernard Glynn (Team Grifols),
Shauna Criner (No Needles), Adrienne Castro (Team Alex and Kylan),
Logan Gutierrez (Logan), Leslie Shimasaki-Kung (Team Shimasaki), Eric
Macias (Team Isaac), Elva Tarin (Delko Louis Garcia), Niccole Reiner
(Love for Lucas), Cheryl Riven (Team Jason), Fernando Alcantara (Team
Fernando), Dr. Richard Metz (Ninja Stars), Clem Adkins (Baxter Western
Warriors), CJ Cook (High Desert
Turtles), Kate Compton (Hipsters for Hemophilia), Edmund Merino
(Team Making it Clot), Patricia Medranda (BioRx Bleeders), Robin
Cull (CVS Caremark Hemo Heroes), Karen Wyatt (Coleman/Scott and
Helpline Youth Counseling), Michelle Dotson (Baxter TO Globe Clotters),
Michele Borowsky (Cole Train), Karen Meier (Meier Family), Amanda
Long (Team Long), Jada Nuno (Team Nuno), Denise Adamson- Brown
(Baxter Westlakers), Jennifer Duncan (Baxter LA), Jo Anna Wright (Team
Nathan), Valinda Linarez
(Team Julian), Scott Carthey (Brothers Healthcare), Matti Vann (GaGa for
Greyson), Dr. Doris Quon (LA Orthopaedic HTC), Andrea Sczesny (Pulse
of Apu), Michael Franzen (Charlie’s Angels), Shawn Guy (Walgreens Team:
Hemophilia Helping Hands), Carmen Navarro (Hemo Feel Ya), Norma
Rodriguez (Benjamin), Linda Corrente (Linda’s Party Walkers), Jennifer
Escobedo (Team Escobedo), Richard Aguilar (NCHS Hemogoblins), Iveth
Moz (Peyton’s Team), Zabela Klyshevich (Baxter Westlake Regulatory
Trailblazers), Karen Arrieta (Cruisers for Bruisers), Marisol Medina
(Jumping Monkeys), Stephanie LaVasseur-Karpati (Team Karpati), Angie
Yanez (Accredo Friends), Jacqueline Ceja (Team Matthew), Ruby Enriquez
(PHC), Lauren Klein (Team Octapharma), Maria Solis (HF Healthcare
Live Love Walk), and Miles Cole (Hemo Homies).
Gracias a todos los equipos, capitanes de equipos, patrocinadores, individuos
y voluntarios por todo su apoyo y generosidad. Ustedes hicieron la Caminata
del 2012 un éxito no podemos esperar para hacerlo el próximo ano.
Michelle Dotson and Team Baxter taking home the prize for Top
Corporate Team Fundraiser
Volunteers check-in Walk Teams
The 4th Annual Hemophilia Walk
Team HF Healthcare Live Love Walk
Team Charlie’s Angels
Joe Kleiber, NHF, Senior Vice President for Chapter Services
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Team Baxter
Tamara Kato, President of HFSC Board of Directors welcomes sponsors
and walkers
Making new friends
Team Baxter
The 4th Annual Hemophilia Walk
Bikers come out to support the Hemophilia Walk
Linda Corrente wishes Harold Crawford Happy Birthday
Team Love for Lucas at the Hemophilia Walk Awards Ceremony
Andressa Rogers, Linda Corrente, and Kate Compton
The bear greets walkers
Team Benjamin
Craziest Team Hairstyle goes to Team Alex and Kylan
Team CVS Caremark Hemo Heroes
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A Huge Thank You to All of Our Supporters at the Hemophilia Walk!
National Presenting Sponsor:
Baxter
National Pacesetter Sponsor:
Bayer Healthcare
National Official Sponsor:
Grifols
Pfizer
National Supporting Sponsor:
Biogen Idec
Gold Sponsor ($5,000):
Novo Nordisk
CVS Caremark
Bronze Sponsor ($1,000):
Rx Guided Alliance
CSL Behring
Los Angeles Orthopaedic
Hospital
Brothers Healthcare
Supporter Sponsor ($500):
Coram Hemophilia Services
Kedrion
CVS Caremark
Octapharma
Walgreens
Biogen Idec
Bio Scrip
Factor Support Network
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In-Kind Sponsor:
Brothers Healthcare
Adroit Sound and
Entertainment
Industry Teams:
Baxter Healthcare $11,566.00
BioRx Bleeders $2,215.00
Brothers Healthcare $1,715.00
Accredo Friends $1,691
City of Hope Roadrunners
$1,655
LA Orthopaedic HTC
Team Making it Clot
CVS Caremark Hemo Heroes
NCHS Hemogoblins
Team Grifols
Coleman/Scott & Helpline
Youth Counseling
Walgreen’s Team: Hemophilia
Helping Hands
Cruisers for Bruisers
PHC
Team Octapharma
HF Healthcare Live Love Walk
Community Teams:
GaGa for Greyson $7,610.47
Charlie’s Angeles $5,940.00
Team Shimasaki $2,650.00
Ninja Stars $2,450.00
Delko Louis Garcia $1,589.00
Team Julian
Cole Train
Love for Lucas
Team Jason
Logan
Team Raul
No Needles
Mickey and Friends
Team Alex and Kylan
Logan
Sandoval Kids
The Brat Pack
Team Isaac
Team Jason
Team Fernando
DnA
Holy Walkamolies
High Desert Turtles
Hipsters for Hemophilia
Meier Family
Team Long
Team Nuno
Team Nathan
Pulse of Apu
Hemo Feel Ya
Benjamin
Linda’s Party Walkers
Fantastic Four
Team Escobedo
Ben’s Team
Peyton’s Team
Hemo Homies
Jumping Monkeys
Team Karpati
Team Matthew
Why is Summer Camp Important?
Some may think it is a little early to start talking about summer
camp, but it is really never too soon to get your child excited
about going. Summer camp for a parent of a child with a bleeding disorder is a great opportunity to send their child to a safe,
very happy and productive environment that will benefit that
child for the rest of their lives. Paul Newman once said, “You
can leave camp, but camp never leaves you.”
We live in a fast paced world with all kinds of electronic devices that often prevent our children from making connections
with other children their age. These devices, as much as we
love them, may seriously be affecting our socialization skills. At
camp these devices are replaced with activities such as camp
fire songs, wood working, swimming and fishing. A camp environment, that is void of these electronic devices, allows them to
learn team work, improves socialization skills and builds trust
in peers and adults. It is all about
the fun, without a plug in or an
internet provider.
Summer camp may be your
child’s first opportunity to meet
other children or an older person
with a bleeding disorder and
begin to bond as early as seven
years old. The unique environment often provides the children
with a sense of relief and helps
them understand they are not
alone. Others share the same
fears, experiences and success
they have. As a result the campers leave camp more confident,
stronger and more self reliant
individuals.
These connections and friendships can be life long. Many
adults with a bleeding disorder that I know are all connected
from their time at camp when they were young. It is amazing
to see how they have grown and supported one another 20 - 25
years later.
Here in Southern California we are lucky to have The Painted
Turtle as our Foundation’s camp.
“The Painted Turtle programs are designed to provide campers
with safe, exciting activities that build self-esteem and confidence while encouraging positive friendships and community.
The Painted Turtle activities are unique, full of surprise. They
help campers discover a magical, creative environment that is
supportive, challenging, and inclusive, fostering both personal
growth and exploration. The Painted Turtle is committed to
a rich and ever-evolving program that engages and stimulates
our campers to become their greater selves. There is no end to
what surprises await campers next!”
Many young children learn how to self infuse while at The
Painted Turtle with the assistance of the on site doctors and
nurses. There is a huge celebration as they are inducted into
the Big Stick Club, where they are paraded around the dining
hall on a chair like a king or queen and presented with an actual “big stick.” This is not a requirement of camp, but it is highly
encouraged by the counselors. Often seeing a peer complete an
infusion is incentive for another to learn. Then at the Foundation’s Family Information Day they are again recognized with
an award during the program.
My son has attended The Painted Turtle for four years, and
each year he is more excited than the last. This excitement
usually starts the day we pick him up when he goes over every
activity and reports on how all his friends are doing. He self
infused for the first time at The Painted Turtle when he was
seven and has gained more
and more self confidence in his
ability to advise his mom and
myself on the need to infuse, or
when he might have a concern
with an injury. I believe that
the time he spends at camp is
irreplaceable and I can see him
becoming more of a leader each
year.
If your child has a bleeding disorder and is at least seven years
of age, please feel free to go to
our website at www.hemosocal.
org for more information and
instructions on how to apply
for camp. It is free for members
of the Foundation and a wonderful life long memory for your children.
The 2013 Summer Camp will be held July 29th through August 3rd.
CJ Cook MBA
HFSC Social Worker
18 Years Servicing & Supporting
The Bleeding Disorders Community
“The Factor Support Network Approach”
Pursuing positive health outcomes
through professional, personalized
and efficient medication management.
Making a difference today ~ for your future!
CONTACT Client Services Representatives in Your Area
Randy DeSantis 805-402-5952
[email protected]
* Edmund Merino 909-709-1083
[email protected]
* English & Spanish Speaking
Toll Free: 877-376-4968
www.FactorSupport.com
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Foundation Awards Scholarships
The Hemophilia Foundation of Southern California would like to
announce the winners of the Christopher Mark Pitkin Memorial
Scholarship. This year, 58 applications were received (six from the
geographical location the Foundation serves, four from other areas
in California, and 48 from out of state) and the judges narrowed it
down to two winners: Alfred Coleman and Rigoberto Manzo Jr.
Both young men impressed the committee with their qualifications
and goals that very much follow in the footsteps of the beloved
Chris Pitkin.
Alfred Coleman plans on pursuing music and performance this
fall in order to follow a dream that he has been working towards
since elementary school. He is an integral part of the hemophilia
commmunity and he plans on sharing his love for music by teaching youth in the community. He is an active member of the Boys
and Girls Club of Long Beach and the Ebenezer Baptist Church.
We are honored to present him with this scholarship to help him
achieve his high academic objectives.
Rigoberto Manzo Jr. attends Cerritos College and he is currently
pursuing a course of study in Health. He works hard to support
himself and attend school simultaneously. He is a well-organized
student who takes his education seriously and is currently main-
Gunnar Helman
Rigoberto Manzo Jr.
taining a 4.0 GPA. His goal is to help others with hemophilia by
sharing his own experiences and volunteering his time to help
others. We are pleased to present Rigoberto with this scholarship
to help him continue the educational endeavors he has already successfully begun.
The Hemophilia Foundation of Southern California has also
awarded honorable mentions to: Kathryn Myers (Moreno Valley,
CA), Julie Slonaker (Lancaster, CA), Gunnar Helman (Ventura,
CA), Tiffany Gossett (Alta Loma, CA), Blake Barrington (Chapel Hill, NC), Mitchell Dickey (Happy Valley, OR), and Aubrey
Whitehead (Lytle, TX).
The Christopher Mark Pitkin Memorial Scholarship has been
created to honor the memory of Chris Pitkin, health policy consultant and advocate, a leader in the hemophilia community, former
president of the Foundation and a beloved friend to many. Awards
of the scholarship are based primarily upon the applicants’ statements of goals and intentions, with secondary consideration given
to location (priority- Southern California), progress in school,
community contributions and extent of need.
Mitch Dickey
Kathryn Meyers
La Fundación Premia Becas
La Fundación de Hemofilia del Sur de California tiene el placer
de anunciar a los ganadores de la Beca Conmemorativa de Christopher Mark Pitkin. Este años recibimos 58 aplicaciones (seis
fuera del area geográfica de la Fundación, cuatro de otras áreas
de California y 48 fuera del estado) y los jueces han decidido en
dos ganadores: Alfred Coleman y Rigoberto Manzo Jr. Ambos
jóvenes tuvieron una gran impresión del comité con sus calificaciones y metas las cuales siguen en los pasos de Chris Pitkin. Alfred
Coleman tiene planes de estudiar música y rendimiento este otoño
para seguir el sueño que ha tenido desde pequeño en escuela elementaría. El es una parte integral de la comunidad hemofílica y
planea en compartir su amor por música al enseñar a jóvenes en la
comunidad. El es un miembro del Club de Boys and Girls de Long
Beach y de la Iglesia Ebenezer Baptist. Es un honor en presentarle
esta beca para ayudarle en alcanzar su objetivo académico.
Rigoberto Manzo Jr. estudia Cerritos College y está actualmente
un curso en el estudio de salud. El trabaja y estudia simultáneamente para apoyarse económicamente. Es un estudiante muy organizado y toma su educación seriamente y actualmente tiene un
GPA de 4.0. Su meta de ayudar a otros con hemofilia al compartir
sus experiencias y ayudar como voluntario para ayudar a otros.
Tenemos el placer de ayudarle con esta beca a Rigoberto para
ayudarle a continuar su camino educacional los cuales ha empezado con mucho éxito.
La Fundación de Hemofilia del Sur de California también ha premiado con mencionar honorablemente a: Kathryn Myers (Moreno
Valley, CA), Julie Slonaker (Lancaster, CA), Gunnar Helman
(Ventura, CA), Tiffany Gossett (Alta Loma, CA), Blake Barrington (Chapel Hill, NC), Mitchell Dickey (Happy Valley, OR),
y Aubrey Whitehead (Lytle, TX).
La beca conmemorativa fue creada en honor de Chris Pitkin, consultante y advocación de póliza de salud, y líder de la comunidad
hemofílica, presidente en el pasado de la fundación y apreciado
amigo de muchos. Las becas son basadas en las declaraciones de
los aplicantes sobre metas e intenciones, secundario con la consideración del lugar (prioridad a aquellos en el Sur de California),
progreso escolar, contribuciones a la comunidad y la necesidad.
HemophiliAction
23
Organ Transplants Increasing in HIV Patients
An October Wall Street Journal (WSJ) article highlights a
new trend--an increase in the number of organ transplants
in HIV-positive patients. Historically, centers have been
reluctant to conduct vital organ transplants in these patients
for a number of reasons. There have been concerns that
recipients would not live long, that HIV-associated diseases
would damage the transplanted organ and that anti-rejection
drugs might degrade organ functions. However, highly
effective anti-retroviral therapies (ART), available since the
mid-1990s, have enhanced overall health and life expectancy
(32.1 years after diagnosis) for HIV patients to such a
degree that organ transplantation is now becoming a viable
clinical option. In fact, aging HIV-positive patients are now
encountering many of the same health issues as the general
population, often necessitating liver, kidney and heart
transplants.
“There are so many patients who are [HIV-positive] but are
in good shape and look better than other patients that we
transplant,” said Hiroo Takayama, MD, PhD, a surgeon
at New York- Presbyterian Hospital/Columbia University
Medical Center. Takayama has done two heart transplants
in HIV-positive patients. “So the question is whether we
really should eliminate those patients—should we let them
die just because they are HIV-positive?” The center is
currently conducting long-term post-transplant follow-ups
on 11 HIV-positive people who have had heart transplants,
a situation that, as the WSJ piece notes, would have been
unprecedented just five years ago.
According to the United Network for Organ Sharing, the
nonprofit organization that manages the US transplant
system, the number of centers that reported doing
transplants on HIV-positive patients increased in 2011 to
at least 48 centers out of the 242 that perform transplants.
In contrast, only 25 centers reported conducting such
procedures in 2005. The overall number of transplants
may be even higher because some states prohibit reporting
information relevant to HIV status. In addition, at least 198
HIV-positive patients received organ transplants in 2011, up
from approximately 58 performed in 2005.
Evidence of the new trend can be found in such institutions
as the Hartford Hospital (HH) in Connecticut. HH actually
rewrote protocols earlier in 2012 to make possible the
centers first heart transplant in an HIV-positive patient,
a procedure barred under previous protocols. As part of
the new protocol, a candidate needs to have taken anti-
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retroviral drugs for a minimum of one year and demonstrate
undetectable viral loads. “There is a scarcity of donor hearts,
and we want to make sure every patient will survive,”
said Detlef Wencker, director of heart-failure services and
cardiac transplantation at HH.
The WSJ article also acknowledged that hurdles still exist
for HIV patients needing transplants. Physicians must
carefully manage the complex interactions between ART
and organ rejection drugs, plus the possible long-term
effect on the health of the transplanted organ. Another red
flag for doctors is the lack of available outcome data on
transplants in HIV-positive patients. Existing data suggest
that providers should be aware of potential complications.
In a recently completed study, researchers at Massachusetts
General Hospital found that patients with undetectable HIV
levels had inflammation in their aortas comparable to people
with known cardiovascular disease. Other studies suggest
that HIV-infected patients are at twice the risk for heart
attacks and strokes as HIV-negative individuals.
While providers continue to weigh the risks vs. rewards
associated with organ transplants, a consensus seems
to be that more long-term outcome data can only be
beneficial. Transplant surgeon Peter Stock, MD, PhD, is
professor of surgery at the University of California, San
Francisco School of Medicine. He is principal investigator
of a multicenter trial of kidney and liver transplants in
HIV-positive patients. Findings from the trial, which was
sponsored by the National Institutes of Health, showed
that HIV-positive transplant patients responded well
overall. Although Stock reported a two-to-three fold higher
incidence of kidney rejection, he added that this incidence
could be lowered by using immunosuppressant drugs.
Stock also stressed that the long-term health of the
transplanted organ remains unknown but other health
conditions “takes life out of the kidney.” While the effects
might not show up in the short-term when measured against
the general population, “we might start to see differences in
survival in five or 10 years,” concluded Stark.
Source: The Wall Street Journal, October 11, 2012
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25
Women with VWD Risk Postpartum Hemorrhage
Results from a new study suggest that current postpartum
strategies do not adequately boost von Willebrand factor
(VWF) levels, contributing to potential postpartum
hemorrhage in women with von Willebrand disease
(VWD). Current strategies do not increase VWF levels to
the normal range or even to levels of women with milder,
untreated VWD. The principal investigator of the study
was Andra James, MD, Professor of Obstetrics and
Gynecology at the University of Virginia in Richmond.
James, who was lead investigator while still at Duke
University, presented early study findings at the World
Federation of Hemophilia’s 2012 World Congress, July
9-12th in Paris, France.
The study, supported by a $1.2 million unrestricted grant
from CSL Behring, was designed to compare changes
in blood levels of VWF proteins postpartum between
31 women with and 40 women without VWD. Of the
14 women with VWD who were treated during the
postpartum period, 12 were given VWF concentrate, one
was given the synthetic hormone desmopressin plus VWF
concentrate and one was treated with desmopressin alone.
childbirth, approached baseline one week postpartum and
reached baseline three weeks postpartum. The pattern of
decrease in these levels was consistent among all patient
groups, but levels were significantly lower in women with
VWD. VWF levels were lowest among treated VWD
patients.
“While a rapid decrease in VWF levels after delivery is
normal, significant decreases following childbirth can
result in an increased risk for postpartum hemorrhage,
especially since women continue to bleed for days to
weeks after delivery,” said James “Given that current
postpartum treatment strategies do not effectively manage
VWF levels in the VWD patient, we hope to conduct
further study into the benefits of prophylaxis treatment
for preventing the potentially serious complication of
delayed postpartum.”
Source: PRNewswire, July 11, 2012
In healthy women, VWF levels fell rapidly after
Mujeres con VWD a Riesgo de Hemorragia
después de Parto.
Resultados de un Nuevo estudio sugieren que estrategias
de posparto actuales, no aumentan adecuadamente
los niveles de factor de von Willebrand (VWF), y
contribuyendo a potencialmente a una hemorragia
de posparto en mujeres con la enfermedad de von
Willebrand (VWD).
Estrategias actuales no aumentan los niveles de VWF
a un nivel normal o a un nivel de mujeres con un nivel
leve de la enfermedad, sin tratar VWD. La investigadora
principal del estudio fue la doctora Andra James, MD
Profesora de Obstétricos y Ginecología de la Universidad
de Virginia Richmond. James fue líder de la investigación
cuando todavía estaba en la Universidad Duke, y
presento encuentros del estudio en la Federación de
Hemofilia Mundial del 2012 en el Congreso Mundial
julio 9-12 en Paris, Francia. El estudio, apoyado por una
beca sin restricciones de $1.2 millones por CSL Behring,
fue diseñada para comparar los cambios de niveles de las
proteínas VWF de posparto en mujeres de 31 a 40 años
sin VWD. De la 14 mujeres con VWD quienes fueron
tratadas durante el periodo del posparto, a 12 se les dio
VWF concentrado, a una se le dio hormona sintética
desmopressin además de VWF concentrado y una fue
solo tratada con desmopressin.
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HemophiliAction
En mujeres saludables, VWF niveles bajaron rápidamente
después del parto, y se acercaron a la línea base en una
semana después del parto y llegaron a la línea base tres
semanas después del parto. El modelo de disminución
de estos niveles fue consistente en todos los grupos de
pacientes, pero los niveles fueron significantemente bajos
en mujeres con VWD. Los niveles de VWF fueron uno de
los más bajos en pacientes con VWD tratados.
“Mientras una disminución rápida de niveles de VWF
después de posparto es normal, disminución significativa
después de dar parto puede ser un resultado in aumento
al riesgo de hemorragia posparto, especialmente en
mujeres que continúan sangrando por días o semanas
después de dar de luz,” dijo James “Dado que el
tratamiento actual de posparto no maneja efectivamente
los niveles de VWF, en pacientes con VWD, esperamos
en tener otros estudios en los beneficios de tratamiento
profiláctico en prevenir complicaciones probablemente
serias y complicaciones por posparto retrasado.”
Recurso: PRNewswire, July 11, 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.
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We offer all factor brands with
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We are community advocates,
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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,
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Nosotros coordinamos los
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Somos abogados por nuestra
comunidad, educadores, voluntarios,
y hasta un consejero para su hijo(a).
(877) 276-4248 | www.brothershealthcare.com
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27
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
December 8
December 15
December 16
Orange County and Inland Empire Holiday Party
*community members living in the OC and IE area*
Los Angeles Holiday Party *community members living in the LA area*
Santa Barbara Holiday Party *community members living in the northern counties*
2013 Calendar of Events
February 9
Family Information Day, Skirball Center
February 27 – March 1
Washington Days – Washington DC, Crystal City Marriott
April 25 - 27
HFA Symposium, Dallas, TX
May 13 - 15
Future Leaders Day – Sacramento, CA
May 15
Legislative Day – Sacramento, CA
July 29 – August 3
Camp Blood Brothers & Sisters, Camp Painted Turtle
October 3 – 5
NHF Annual Convention, Anaheim, CA
• 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
Sera Determinado
Sera Determinado
Fiestas Navideñas – Entrega de Juguetes
Inland Empire, Los Angeles, Northern California & Orange Eventos Regionales
Calendario de Eventos 2013
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
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