HemophiliAction - Hemophilia Foundation of Southern California


HemophiliAction - Hemophilia Foundation of Southern California
A publication of the Hemophilia Foundation of Southern California Volume 7 • Issue 4 • Winter 2010
Promise and Progress as Spirits Soar
Life in a Dynamic Learning Environment
Hemophilia Foundation
of Southern California
6720 Melrose Avenue
Hollywood,CA 90038
Tel: 323-525-0440
Fax: 323-525-0445
[email protected]
is published quarterly by:
The Hemophilia Foundation of
Southern California
The Hemophilia Foundation of Southern
California (HFSC) does not endorse any
particular pharmaceutical manufacturer or
home care company.
PLEASE NOTE: The companies whose
advertisements are listed herein have
purchased this space, and are NEVER
provided with members’ names, addresses
or any other personal details. Paid
advertisements should not be interpreted
as a recommendation from HFSC, nor do
we accept responsibility for the accuracy of
any claims made by paid advertisements.
Since we do not engage in the practice
of medicine, we always recommend that
you consult a physician before pursuing
any course of treatment.Information and
opinions expressed in this publication are
not necessarily those of the HFSC, or of its
editorial staff.
Material printed in this publication may
be reprinted with express prior written
permission from the Executive Director.
Board of Directors
Dr, Richard Metz, MD. President
Tamara Kato, Melissa Franzen,
VP Fundraising VP Board Development
Doris Quon, MD,
Medical Director Giovanny Pernudi
Garry Bissonnette
Judy Mangione
Secretary Jorge Catedral
Linda Corrente, Executive Director
Helena Smith, Office Manager
Special Thanks
Tamara Kato, Proofreader
Angie Yanez, Spanish Translation
Linda Corrente, Editor
Mark Elias, Art Director
Hemophilia Foundation of
Southern California
6720 Melrose Ave.
Hollywood, CA 90038
Tel: (323) 525-0440
Toll Free: (in CA only)(800) 371-4123
Fax: (323) 525-0445
E-mail: [email protected]
Web: www.hemosocal.org
President’s Report
I am very pleased to report that our Foundation
is doing extremely well. Our recent Walk which
was our second such event raised over $110,000
and brought together a large group of very
spirited and giving people from our community.
Our earnings put us in third place for top Walk
fundraising among all of the participating NHF
chapters. I want to personally thank our staff for
such an outstanding job, as well as all our team
captains, team members and sponsors for a job
well done.
It was also a privilege to attend our retreat in
September at Camp Malibu and begin to know
so many of you on a more personal level. I was
particularly inspired by the awesome talent
that was generated at our America`s Got Talent
show which featured many participants from all
ages singing, doing comedy, dancing, and even
chewing large amounts of marshmallows. The
band was also wonderful. I am hopeful that
next year we will be able to expand this great
fun-filled event even more. We had many other
sessions, including a well attended advocacy
session, which will hopefully inspire many more
people to get involved.
Our Board of Directors is still looking for
additional qualified individuals to fill a few
vacant seats. I have found this a very rewarding
experience and would recommend that any of you
who would like to give back to the community
by volunteering your time in this leadership role
to please contact the Foundation. Our meetings
Dr. Richard Metz
are once per month. Most meetings are by
conference call with one in-person meeting each
quarter. Your presence on the Board gives you a
say as to what programs and events we sponsor
throughout the year.
In closing I wish you all a very happy holiday
season. May the coming year bring good health
and fortune to our Foundation and our entire
Richard J. Metz, M.D.
Hemophilia Foundation
Southern California
Reporte del Presidente
Estoy muy orgulloso de reportar que la Fundación
esta extremadamente bien. Nuestra caminata
reciente, la cual fue nuestro evento de este tipo,
recolecto más de $110,000 y unió a la comunidad,
un grupo grande de personas con gran animo y
ganas de donar. Nuestras ganancias nos ponen en
tercer lugar como la Fundación que Recolecto más
fondos en la Caminata entre todas la Fundaciones
participantes de NHF. Les quiero agradecer
personalmente a nuestros empleados por un gran
trabajo, y también a nuestros capitanes de los
equipos, miembros de los equipos y patrocinadores
por un gran trabajo.
Fue un placer el participar en el retiro en
septiembre en el Campamento Malibu ya que pude
empezar a conocer a muchos de ustedes a un nivel
personal. Estuve particularmente inspirado por el
gran talento que se provoco en nuestro show de
America Tiene Talento el cual incluyo a muchos
participantes de todas la edades cantando, como
comediantes, bailando, y también masticando
grandes cantidades de dulces. La banda también
fue una gran adición. Estoy esperanzado que el
próximo año podremos mejorar este evento aun
mas. También tuvimos otras sesiones incluyendo
a una sesión de advocación muy bien participada,
la cual ojala inspire a muchos otros a que mas
personas se involucren.
Nuestra Junta de Directores todavía esta buscando
individuos adicionales calificados para llenar una
sillas vacantes. Encontré que este año fue una
experiencia muy gratificante y se la recomiendo
a cualquiera de ustedes, si están interesados en
devolver a la comunidad al ser voluntario en un
papel de liderazgo, por favor comuníquese con
la Fundación. Nuestras reuniones son una vez al
mes. Casi todas la reuniones son por llamada de
conferencia con una reunión en persona una vez
cada tres meses. Su presencia en la Junta le da
una voz en que programas y eventos debemos
patrocinar a través del año.
Para finalizar, les quiero desear unos Felices Días
Festivos. Espero que el año nuevo les traiga salud,
y buena fortuna a nuestra Fundación y toda la
Richard J. Metz, M.D.
Grifols Sample Program
Healthcare providers and/or Treatment Centers, please contact Grifols Customer Service at 888.325.8579
to determine eligibility for this program. Samples are subject to availability.
For further information call: Grifols USA, LLC Professional Service: 888-GRIFOLS (888 474 3657)
Customer Service: 888 325 8579; Fax: 323 441 7968 www.grifols.com
Get 3 Free Sample Doses For Your Patients
Grifols Biologicals Inc.
5555 Valley Boulevard, Los Angeles, California 90032, USA
Executively Speaking
Promise and Progress
As 2010 concludes, I look back at
our year’s educational and social
activities. The active involvement is
booming with overall participation
up and creating waiting lists for
camp, and the retreat. Through
our eyes we see what our founding
parents dreamed for their children.
Just fifty six years ago, they wanted
their children to live a long and
productive life. I feel so deeply that
their spirit is with all of us as your
children skip and run at our retreat,
camp, and at the Hemophilia Walk.
They promised to improve the quality of life
for the bleeding disorder community when
they began the Foundation. And we are living
the progress of the efforts of all. It is our
privilege and honor to see one of the founding
parents, Gerry Green as an active member and
we are fiscally strong and our continued efforts
to reduce costs and seek new revenue streams
have benefited the programs. I am
especially proud of the staff and
board members for their work in
increasing our fund raising.
As we look toward a future of
economic uncertainty, I have two
priorities to help the Foundation
increase our impact per dollar
spent. The first is to make sure our
internal processes run smoothly by
creating an environment in which
our staff can do its best work. My
second priority is to improve the
quality of our external partnerships, which are
our lifeblood. Thank you to our corporate and
individual donors.
As we address these important issues, we will
be guided first and foremost by how this work
contributes to our overarching goal of helping
improve the lives of the bleeding disorder
community. In the end, impact is why we’re
here, pursuing excellence while promoting
inclusiveness and respect for differences.
As you view the scholarship winners in this
issue, know that they are our promise and
progress and may their spirits soar.
Merry Christmas and Happy Holidays,
Linda Corrente
Executive Director
This has been a very hard year for foundations
and nonprofits and the near future doesn’t
look any easier. Many nonprofits have fewer
resources at precisely the moment when the
need for their services is greatest. However,
Promesa y Progreso
Ya que el 2010 concluye, miro hacia atrás a
nuestras actividades sociales y educativas.
La participación activa esta mejorando con
participación aumentando y creando listas de
espera para el campamento y el retiro. A través
de nuestros ojos, vemos lo que los padres que
empezaron nuestra Fundación soñaban para sus
hijos. Solo cincuenta años atrás, ellos querían que
sus hijos vivieran una vida larga y productiva.
Siento algo muy profundo de que el espíritu de
ellos esta con nosotros mientras los niños corren y
brincan en el retiro, campamento y en la Caminata
de Hemofilia. Ellos prometieron mejorar la calidad
de vida para la comunidad con enfermedades
sanguíneas cuando empezaron la Fundación.
Y nosotros estamos viviendo el progreso y los
esfuerzos para todos. Es un privilegio y un honor
de ver a una de las Madres Fundadoras, Gerry
Green como un miembro activo y participante.
Este ha sido un año difícil para Fundaciones
y organizaciones sin fines lucros- y el futuro
cercano no se ve fácil. Y muchas organizaciones
sin fines lucros, tienen menos y menos recursos
y precisamente en el momento en que mas las
necesitan. Sin embargo, estamos físicamente
fuertes y nuestro continuo esfuerzo para disminuir
el costo y buscar nuevos recursos de fondos los
cuales han beneficiado los programas. Estoy
especialmente orgullosa de los empleados y
miembros de la junta directiva por su trabajo en
mejorar nuestra recolección de fondos. Nuestro
Hemophilia Treatment Centers Doctors at the
Walk, Dr. Doris Quon, Dr. Nadia Ewing
Dr. Guy Young & sons, Corey Parker & daughter, & Linda at the Walk
impacto por cada dólar gastado. La primera es
de hacer nuestro proceso interno que siga más
sin incidentes, para crear un ambiente en el
cual nuestros empleados puedan hacer el mejor
trabajo posible. Mi segunda prioridad
es de mejorar la calidad de colaboración externa,
las cuales son nuestra línea de vida. Gracias
a nuestros patrocinadores corporativos e
promovemos respeto de diferencias.
Mientras dirigimos la atención a temas
importantes, nos estaremos guiando primero
que todo por como este trabajo contribuye a
nuestra meta
total de ayudar
las vida de la
Al final, el
impacto es por
lo cual estamos
aquí, siguiendo
Linda Corrente
Directora eejcutiva.
Ya que vea a los ganadores de las becas en esta
revista, ellos son nuestra romesa y progreso y
que sus espíritus vuelen.
Feliz Navidad y Felices Días Festivos,
Con Cariño,
2010 Donors Thank You for your Generosity 2010 Donors!
Titanium Sponsors ($50,000
& above)
Baxter BioScience
Novo Nordisk
Platinum Sponsors ($25,000$49,000)
Bayer Healthcare
CSL Behring
Gold Sponsor ($20,000$24,999
Silver Sponsor ($15,000$19,999)
Mark Leone Summer Camp
Bronze Sponsors ($10,000$14,999)
Aida & Philip Leone
Factor Support Network
Copper Sponsors ($5,000$9,999)
Baxter International
Brothers Healthcare
Catherine Leone & Keith
Grifols USA
Guided Alliance
Acme Healthcare
Baxter Employee Run
Baxter Golfers
Baxter Thousand Oaks
Baxter Van Nuys
Baxter Westlake Walkers
Biomed Pharmaceuticals
Caremark Therapeutic Services
Carlos Santa Cruz
Children’s Hospital Orange
Children’s Hospital Los
City of Hope
Conrad & Marie Janis
Coram Hemophilia Services
Edison International
Gary Johnson
HCG Healthcare
Hemophilia Alliance
Hemophilia Association of San
Herndon Pharmacy
Homecare for the Cure
Inclinix Inc.
Jonathan Dahan
Kevin Shaughnessy
Make A Wish Foundation
Miller’s Children’s Hospital,
National Cornerstone Healthcare
Orthopaedic Hospital
Patrick McKeown
Pauline Logan
Premier Hemophilia Care
Prudential Overall Supply
Rudi Schulte Foundation
Scott Carthey
Talecris Biotherapeutics
Tawny Phan
United Way
Diane Hulbert
Diego Fairbanks
Div Cor Inc.
Dixie Olson
Donna Gallegos
Doris Quon, MD
Edison International
Edmund Merino
Edward & Barbara Gomperts
Ellen Greenberg
Erik Brenizer
Eva Bastida
Express Scrip
F. Lebrecht
Francis Lao
Frank & Vivian Stefkovich
Gabriela Mora
Gayathri Ganesan
Gilbert Ursulo
Gloria Lawrence
Alpha Omega Chapter
Angela Acevedo
Community Health Charities
Davidson Hotel
Diane Linarez
Ellis Sulser
Greg Rich
Hope at Home.
Joe Pugliese
Leslie Muir
Michael Amash
Robert Parkinson
Richard & Jane Metz
Richard Rice
Rudi & Berta Schulte Angles
Sempra Energy
Shawn Simmons
Terry Rice
Albert Venegas
Alexia Farrell
Allen Cato
Alona Metz
Amy Britton
Amy Joe
Andrew Hrisanthopoilas
Ann Oisthoom
Anne Schindler
Anthony Tiedje
Arthur Burkhard
Ashok Patel
Barbara Ketchum
Bernard Glynn
Berton Bradley
Billy Zardenetta
Bio -Tech
Bernie & Gisela Stowers
Brian Fleury
Brian Quon
Brian Taylor
Brian Tran
Capable Transport
Carl Morris Jr.
Carlos Ribadeneira
Carol Kasper, MD
Carolina Salstrone
Caroline Ritchie
C. Hearn
Charles & Betsy Cook
Charles Eckert
Cheryl Lawrence
Christina Chow
Christina Defloria
Christine Morgan
Christopher & Melissa Davis
Cindy Horvath
Clem Adkins
Clinton Lee
Clinton Palmer
Connie Romero
Corey Parker
Crista Tirtilli
Dan Garofalo
Daniel Monti
Daniel Robison
Dario Serna
David Ackerson
David Ballintine
Dean Hulbert
Deborah Birndorf
Deborah Kravitz
Diane Brandes
Camp donors, Catherine Leone and
Keith Lehmann
Donations Made In Honor:
Los donativos Hicieron En el Honor
July - November 2010
Baxter Bioscience
Gloria Loo
Greg Ware
Guidepoint Global
Guillermo Zuniga
Harold & Sally Crawford
Harold Vandeinse
Heather Almond
Heather Armstrong
Heather Griffin
Hilary Polk
Howard Simon
J. Gordon McComb, MD
Jack Lenny
Jackie & Don Feinstein
Jaime Morales
James Franzen
James Gavin
James Lolis
James Yonago
Jamie Weaver
Jared Andrus
Jay Amundson
Jay Glick
Jeanie McKay
Jeffrey Gardner
Jeannette & Renan Pulecio
Jennie Trejo
Jesus Cortez
Jesus Ramirez
Joan Franzen
Joann Cunningham
Jodi Hill
Joe Blum
John Horton
John Sansone
John Skhal
Jose Corral
Joy Peterman
Judith Franzen
Judy Minami
Julie Hotchkiss
Justin Furniss
Kandis Spector
Karlene Dockery
Katherine McDonald
Kathleen Rooney
Kathy Melgar
Kathy Zarate
Kay & Tom Bergsland
Keith Murray
Kermit Newcomer
Kerri Boeddeker
Kieron Mcfadyen
Kim Hanson
Kramer-Wilson Insurance
Kris Chen
Kristan Martinez
L.A. Frigone
Lauretta Logan
Laura Cox
Leslie Harris
Leslie Vincent
Leticia Cisneros
Linda Clough
Lita Fernandez
Lucinda Hey
Lyle Sexton
Lyman Goldsmith
Lynn Lawrence
Man Do
Margaret Darby
Marie Kissel
Marina Akselrud
Marianne & George Bakic
Marianne Diaz
Marie Kennedy
Marilyn August
Marion Diener
Marisela Cordero
Mario Saragossa
Marsha Carthey
Martin Lee
Martin Serna
Marshal Fichman
Mary Esparza
Mask Inc.
Matthew March
Maureen Ridley
Max Debrouwer
McKay & Co.
Meldon C. Levy, MD
Michael Coyne
Michael & Melissa Franzen
Michael Lazo
Michael Baldridge
Michael Chaikin, MD
Michael Erspamer
Michael Saragossa
Michael Self
Michael Suarez
Michelle Gilmore
Michelle Harris
Michelle Jimenez
Michelle Rhoads
Michelle Samuelson
Monica Cervantes
Nadia Ewing, MD
Nancy Lee
Nancy Leonard
Nathan Timmons
Ndidi Obidoa
Nestor Linarez
Niccole Reiner
Niesje Heusden
Optometric Vision Care
Oscar & Ginny Campbell
Parrott Bay
Patricia Carter
Patricia Lee
Paul Baker
Paul Ko
Pauline Wong
Perry Parker
Peter Cajthamil
Peter May
Peter Parker
Phillip Johnson
Rachel Mercier
Raymond Wong
Rena Robles
Renee Mann
Ricardo Lopez
Richard Kaplan
Richard Protzel
Rick Reveles
Robert Caplan
Robert Friedman
Robert Horvath
Robert Rodriguez
Roberto Castillo
Robin McGowan
Ronald Salgado
Rosby Lamm
Rosa Vasquez
Sam Berkow
Sandra Knight
Scott Hastings
Scott Vollet
Sharon Soo Hoo
Shelby Dietrich, MD
Sheri Schneider
Shawn Noormand
St. Catherine School
Stephen Copps
Stephen & Katherine Webster
Stephen & Toni Dowling
Stephen Welch
Steven Brown
Sunny Pearson
Susan Brown
Susan Kingston
Susan Mellana
Suzanne Galen
Sylvia Morlaes
Takeda Pharmaceuticals
Tamara & David Kato
Ted Fu
Teresa Hays-Horner
Thomas Bissonnette
Thy Tran
Teresa Laughery
Terri Erspamer
Thomas Bergsland
Timothy McFadden
T. M. Landscape
Tobin Ellis
Tonia Gould
United Bluegrass
United Way
Veronica Diaz
Victor Espinosa
Victor Ramirez
Vince Luong
Vivian Szeto
Vonda Andrews
Walter Johnson
William Day
William & Judy Metscher
William Morgan, MD
William Reiner
William Stopher
William Tiedje
Wilmer & Judith Pittman
Wing Yen Wong, MD
Yetsuko Hanamoto
Yolanda Padilla
In Memory/En Conmemoracion
Bejamin Hom
Sheldon & Maria Hom
Michael Schmidt
Sandra Schmidt
Mary J Wallis
Herb Williams
Israel Vasquez Jr.
Israel & Laura Vasquez Jr.
Arron Velez
Antonio Velez
Luverne Hays
Christopher Hays
Joseph Hays
Thomas Hays
Teresa Hays Horner
Dr. Laurence J. Logan
Julia Donlou
Shelby Dietrich MD
Dr. Edward & Barbara
Natalie Hartigan
William Morgan MD
2010 Annual Hemophilia Walk!
On October, 9, 2010, the Hemophilia Foundation held its 2nd annual
Hemophilia Walk at the historic Los Angeles Coliseum.
whose team raised an unbelievable $15,096! Grifols came in a close second
place with an amazing $11,915.
It started off as a bright and sunny day, but not even the sun could
outshine our outstanding Walk teams and individuals who came out to
walk to raise funds and awareness about hemophilia and other bleeding
disorders. For the past few months leading up to the Walk, teams and individuals alike had been effortlessly raising funds on their own which would
go towards crucial research, advocacy and education. Teams showed off
their team pride with specially made team t-shirts and it was great to see
everyone in such high spirits as the Walk prepared for its start.
We also want to recognize our Team Captains who did an excellent job
holding the teams together: Antonio Rosas (Accredo’s Hemopilia Health
Services), Albert Jimenez (Albert Jimenez), Clem Adkins (Baxter
BioScience Team Adkins Western Warriors), Robert Friedman (Baxter
BioScience Team Friedman), Elizabeth Szczepanek (Baxter BioScience
Thousand Oaks), Stacie Delaney (Baxter BioScience Westlake Village),
Gus Hernandez (Baxter BioScience Los Angeles & Van Nuys), Karen
Arrieta (Bayer’s Cruisers for Bruisers), Linda Reyes & Gabriela Mora
(BioScrip Walkers), Kevin Shaughnessy (Brothers Healthcare), Brenda
Santa Cruz (Carlitos Family), Tamara Kato (Comfort Keepers), Reina
Castaneda (CVS Caremark Factor Footers), Susan Shannon (Friends and
Family of Team S.H.A.R.E), Ana Sosa (Gladiators), Wendy Whoriskey
(Gold Star Magnets), Irene Maldonado (Got Factor?), Bernard Glynn
(Grifols), Connie Inglis (Guided Alliance
Team), Betsy Cook (High Desert Turtles),
Bonnie Mills (Inspiration), Melissa Franzen
(Lego Star Wars Infusionators), Linda Corrente (Linda’s Party Walkers), Michelle Jimenez (Love for Lucas), Dr. Richard Metz
(Ninja Stars), Ruby Villavisencio (OMG
HTC Walkers), David Paup (Pfizer), Ruby
Enriquez (PHC), Marcie Reynolds (Reynolds), Patrice Little (Ribbons for Research),
Lisa Pullens (Road Runners), Karl Score
(Team Cure), Ellis Sulser (Team Ellis), Megan Noller (Team HFSC),
Eric Macias (Team Isaac), Jose Corral (Team Jackson), Victor & Valinda
Ribadeneira (Team Julian), Brittny Mellana (Team Mellana), Leslie
Shimasaki (Team Shimasaki), Eddie Soto (Team Taylor), Joshua Nuno
(The Bleeders), Tanya Robison (The Brat Pack), Amanda Molina (The
Bruisers), Debbie Black (Tnd Cornerstone), Matthew Kempf (Walgreens
– There’s a Way), and Shelly Haight (Walk for Dustin – Factor IX).
After Kaylee Score belted out the National Anthem, the Walk officially
kicked off with a total of 940 walkers eagerly setting their feet on the
starting line. Walkers continued to smile through the sweat and heat as
they finished each lap, cheering each other on right to the finish line. What
awaited the walkers at the finish line were
hugs, smiles, high-fives, walk medals to symbolize their participation in the Hemophilia
Walk, and better yet, ice cream provided by
our national sponsor, Baxter!
Even after every individual had completed the walk, everyone remained at the
Coliseum, enjoying the beautiful California
weather, munching on an array of food
donated by Baxter, Bayer, Pfizer, and meeting other families who share the same experiences as one another. During
this time, National Hemophilia Foundation’s Mary Ann Ludwig recognized our national sponsor, Baxter, Bayer and Talecris. The Foundation’s
Executive Director, Linda Corrente, President of the Board, Dr. Richard
Metz, and longtime community member Gerry Green, presented special
awards to teams. The “Most Creative T-Shirt Design” went to Team Julian with their brightly colored Sesame Street inspired t-shirts. The “Most
Unique Team Name” award went to The Brat Pack whose unique name
nabbed them much attention and Love for Lucas took home the prize of
“Largest Number of Team Members.” The motorcycles parked in front of
the Coliseum were hard to miss and its riders, representing Team Isaac,
collected donations on the spot earning them the award for “Most Spirited
Team.” The “Top Team Fundraiser-Community” award went to Lego Star
Wars Infusionators who raised a whopping $9,036.50! The “Top Individual Fundraiser” was Michael Franzen, who also represented Lego Star
Wars Infusionators. The “Top Team Fundraiser-Industry” went to Baxter
In the end, it didn’t matter what team you were representing or how much
you had raised but what mattered was that everyone’s hearts were in the
same places, which was to raise funds and awareness about hemophilia
and other bleeding disorders. We thank everyone who showed their support by participating in our Hemophilia Walk. With all your help, the
Foundation raised $110,935!! We are so proud to have such a tight-knit
community and we look forward to seeing all of you at next year’s walk.
Thank You for Your Support at our 2nd Annual Hemophilia Walk!
Total Number of Walkers: 940
National Presenting Sponsor
Baxter BioScience
National Milestone Sponsor
Bayer Healthcare
National Supporting Sponsor
Pfizer Inc.
National Event Sponsor
Talecris Biotherapeutics
Gold Sponsor ($5,000-$15,000)
Novo Nordisk
CSL Behring
Bronze Sponsor ($1,000-$7,000)
Factor Support Network
Children’s Hospital Los Angeles
Children’s Hospital of Orange County
City of Hope
Miller Children’s Hospital Long Beach
Orthopaedic Hospital
Supporter ($500-$4,500)
CVS Caremark
Brothers Healthcare
Accredo’s Hemophilia Health Services
Premier Hemophilia Care
National Cornerstone Healthcare Services
Industry Teams
Baxter Healthcare, $15,096
Grifols, $11,915
Brothers Healthcare, $5,215
CVS Caremark Factor Footers, $2,091
BioScrip Walkers, $1,695
Team Ellis
Accredo’s Hemophilia Health Services
Tnd Cornerstone
Guided Alliance Team
Biomed Super Cruisers
Road Runners
Bayer’s Cruisers for Bruisers
Friends and Family of S.H.A.R.E
Team Cure
Walgreens – There’s a Way
Community Teams
Lego Star Wars Infusionators, $9,036.50
Team Robbie, $4,320
Love for Lucas, $3,635
Team Shimasaki, $3,335
Carlitos Family, $3,110.50
Team Jackson
Ninja Stars
Team Julian
Got Factor?
OMG HTC Walkers
The Bleeders
Walk for Dustin – Factor IX
Team Mellana
Gold Star Magnets
Team Isaac
The Brat Pack
Linda’s Party Walkers
Comfort Keepers
High Desert Turtles
The Bruisers
Ribbons for Research
Albert Jimenez
Team Taylor
¡Caminata Anual de Hemofilia 2010!
En octubre 9, 2010 la Fundación de Hemofilia tuvo su 2nda Caminata
de Hemofilia Anual en el histórico Coliseo de los Ángeles.
Empezó como un día asoleado, pero el sol no pudo detener a nuestros
grupos de Caminantes e individuos que vinieron a la caminata para
recolectar fondos y educar sobre hemofilia y otras enfermedades sanguíneas. Durante los meses pasados acercándose a la caminata, grupos e
individuos ambos, han estado recolectando fondos fácilmente los cuales
serán usados para investigación, advocación, y educación. Grupos demostraron su orgullo con camisetas hechas y fue un place ver a todos con
su espíritu mientras la Caminata se preparaba para su comienzo.
Después de que Kaylee Score cantó el himno nacional, la caminata oficialmente empezó con un total de 940 caminantes animados de empezar
la caminata. Caminantes continuaron sonriendo durante el sudor y
el calor mientras terminaban cada vuelta, animándose a si mismos al
llegar al final. Lo que les esperaba a los participantes fueron abrazos,
sonrisas, y medallas de la caminata para simbolizar su participación en la
caminata de Hemofilia, y aun mas, helados proporcionados por nuestro
patrocinador nacional, Baxter.
Aunque cada individuo había completado la caminata, todos se mantuvieron en el Coliseo, disfrutando del gran clima de California, comiendo
de una variedad de comida donada por Baxter, Bayer, Pfizer, y conoci-
endo a otras familias que compartieron la misma experiencia como cada
uno. Durante este periodo, May Ann Ludwig de la Fundación Nacional
de Hemofilia reconoció a nuestros patrocinadores nacionales, Baxter,
Bayer, y Talcris. La Directora de la Fundación , Linda Corrente, Presidente de la Junta Ejecutiva Dr. Richard Metz, y miembro de la comunidad de mucho tiempo Gerry Green, presentaron premios especiales a
los grupos. El grupo con “el Diseñó mas Creativo en Camiseta” se le dio
al Equipo Julian con sus camisetas de color radiante inspiradas por La
Plaza Sesamo. El “Nombre de Equipo mas Creativo” fue al equipo Brat
Pack por el cual su nombre único les dio mucha atención y el equipo
Love for Lucas tomó el premio por el “Equipo con mas Participantes.”
Las Motocicletas se estacionaron en frente del Coliseo y fueron difíciles
de perder y sus motociclistas representaron al equipo Team Isaac, los
cuales recolectaron fondos en ese mismo lugar y se ganaron el premio
de “Mejor Animo.” El equipo de “Recolección de Mas Fondos de la Comunidad” se gano el premio los Lego Star Wars Infusionators ¡quienes
recolectaron $9,036.50! El Individuo que mas Recolecto” fue Michael
Franzen, que también representaba a Lego Star Wars Infusionators.
El de “Recolección de Mas Fondos en la Industria” fue a Baxter ¡que
recolecto un increible $15,096! Grifols llego cerca con segundo lugar
con un increible $11,915.
También queremos reconocer a los Capitanes de los Equipos quiene
hicieron un gran trabajao en juntar a sus equipos (Accredo’s Hemopilia Health Services), Albert Jimenez (Albert Jimenez), Clem Adkins
(Baxter BioScience Team Adkins Western Warriors), Robert Friedman
(Baxter BioScience Team Friedman), Elizabeth Szczepanek (Baxter BioScience Thousand Oaks), Stacie Delaney (Baxter BioScience
Westlake Village), Gus Hernandez (Baxter BioScience Los Angeles &
Van Nuys), Karen Arrieta (Bayer’s Cruisers for Bruisers), Linda Reyes
& Gabriela Mora (BioScrip Walkers), Kevin Shaughnessy (Brothers Healthcare), Brenda Santa Cruz (Carlitos Family), Tamara Kato
(Comfort Keepers), Reina Castaneda (CVS Caremark Factor Footers),
Susan Shannon (Friends and Family of Team S.H.A.R.E), Ana Sosa
(Gladiators), Wendy Whoriskey (Gold Star Magnets), Irene Maldonado (Got Factor?), Bernard Glynn (Grifols), Connie Inglis (Guided
Alliance Team), Betsy Cook (High Desert Turtles), Bonnie Mills
(Inspiration), Melissa Franzen (Lego Star Wars Infusionators), Linda
Corrente (Linda’s Party Walkers), Michelle Jimenez (Love for Lucas),
Dr. Richard Metz (Ninja Stars), Ruby Villavisencio (OMG HTC Walkers), David Paup (Pfizer), Ruby Enriquez (PHC), Marcie Reynolds
(Reynolds), Patrice Little (Ribbons for Research), Lisa Pullens (Road
Runners), Karl Score (Team Cure), Ellis Sulser (Team Ellis), Megan
Noller (Team HFSC), Eric Macias (Team Isaac), Jose Corral (Team
Jackson), Victor & Valinda Ribadeneira (Team Julian), Brittny Mellana (Team Mellana), Leslie Shimasaki (Team Shimasaki), Eddie Soto
(Team Taylor), Joshua Nuno (The Bleeders), Tanya Robison (The
Brat Pack), Amanda Molina (The Bruisers), Debbie Black (Tnd Cornerstone), Matthew Kempf (Walgreens – There’s a Way), and Shelly
Haight (Walk for Dustin – Factor IX).
Al final, no importo cual Equipo Usted representaba o cuanto recolecto
pero lo que importaba era que el Corazón de todos los participantes
estaba en el mismo lugar, el cual era de recolectar fondos y aumentar
conocimiento sobre hemofilia y otras enfermedades sanguíneas. Les
agradecemos a todos por su apoyo al participar en nuestra Caminata
de Hemofilia. ¡¡ Con toda su ayuda, la Fundación pudo recolectar
110,935!! Estamos muy orgullosos de tener una comunidad tan unida y
esperamos verlos a todos el próximo año.
My name is Judy Redmond and I attended the Hemophilia
walk in Los Angeles with my son and family. My son, Loren
Redmond has severe Hemophilia A with inhibitors and type 1
Diabetes. This walk was our first one and I have to say it was
a huge accomplishment for my son. When he was 10 years old,
he had a lot of trouble with his knees and became wheelchair
bound. If it wasn’t for Dr. James Luck and getting a radiosynovectomy on both knees I don’t think he would be able to walk
today. Watching him complete the walk was a huge milestone in
our lives! I’m so glad we were able to attend. I am sending you
a few of our photos from the day, thank you for all of your support with the bleeding community!
Koate Reminder Ad_BDI_Print Ready_AMC_LMR Approved_08-09.pdf 9/3/2009 12:33:38 PM
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.
©2009 Talecris Biotherapeutics, Inc.
All rights reserved.
Printed in USA
August 2009
Camp Blood Brothers and Sisters
Campers that earned their Big Stick Award:
• Marvin Bindoy
• Mike Bindoy
• Albert Jimenez
• Mason Schneidet
• Osean McClintock
• Miles Cole
• James Levai
• Fiach Echandi
• Carson Knight
• Raul Ibarra (port)
• Jose Dominguez
• Isaac Shin
• Bryant Miron
Campers that earned the Big Courage award, for
attempting to self infuse at camp:
• Joshua Aponte
• Enrique Dominguez
• Jose Aguilar
We also recognized 2 campers who were extremely
supportive and encouraging to all the other campers going
for their big stick. Those campers were Andrew McElhatton
( LIT ) and Dustin Huerta.
“Hemophilia is just one small part of life for Nick
and Cody. ADVATE therapy allows them to treat
their bleeds as their doctor prescribes and go on
with their lives.” — Karen Chicago, IL
Make hemophilia a smaller part of your life
Contact your doctor for more information
Important Risk Information for ADVATE Therapy
You should not use ADVATE if you
are allergic to mice or hamsters or any
ingredients in ADVATE.
not able to prevent or control bleeding
episodes with your regular doses of
factor VIII therapy.
You could have an allergic reaction to
ADVATE. Call your doctor right away
and stop treatment if you get a rash or
hives, itching, tightness of the throat,
chest pain or tightness, difficulty
breathing, light-headed, dizziness,
nausea, or fainting.
Side effects that have been reported
with ADVATE include: cough, sore throat,
unusual taste, abdominal pain, diarrhea,
nausea, headache, fever, dizziness, hot
flashes, chills, sweating, joint swelling,
itching, hematoma, and swelling of legs.
Call your doctor right away about any
side effects that bother you.
Your body may form inhibitors to factor
VIII, which may stop FVIII products
including ADVATE from working
properly. Contact your doctor if you are
Please refer to adjacent page
for Brief Summary of Prescribing
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.
Baxter and Advate are registered trademarks of Baxter International Inc.
©Copyright (April 2010), Baxter Healthcare Corporation. All rights reserved. HYL5430
ADVATE [Antihemophilic Factor
(Recombinant), Plasma/Albumin-Free
Method] is a medicine used to replace
clotting factor VIII that is missing in people
with hemophilia A. ADVATE is used
to prevent and control bleeding in
people with hemophilia A. Your doctor
may give you ADVATE when you
have surgery.
ADVATE is not used to treat von
Willebrand’s disease.
Family Retreat and Camp Reunion
The 2010 Hemophilia Foundation of Southern California Family Retreat took
place on the weekend of September 10-12, at the Wilshire Boulevard Temple
Camps & Conference Center located in beautiful Malibu. It was a getaway
unlike any other for over 200 families and community members as they
experienced a family camp full of energy and excitement. Upon entering the
campgrounds, families were greeted by a game of baseball, led by Ivan Sada.
With ice breakers such as human bingo, fellow community members had the
opportunity to meet and greet with other families while enjoying live music by
Kaylee Score and her band. The first night’s events concluded with delicious
s’mores by the campfire.
The second day of the retreat was full of activities and entertainment to last a
lifetime. National Hemophilia Foundation’s Team Hemophilia joined us as they
led leadership games and encouraged youth to live active and healthy lifestyles.
Meanwhile, the men went on a beach
and nature hike with amazing views
of Malibu beach, a chance for the
dads and adult men of the community to bond. The women, on the
other hand, enjoyed a peaceful and
quiet yoga session with instructor
Jennifer Banando. After the morning
activities, everyone gathered to enjoy
a BBQ lunch on the field while Fulcrum Adventures Inc. started setting
up for rock climbing and the ropes
course. All the children hurriedly
finished their meals as they eagerly
awaited their turn in line for the hit
activity of the day.
For the few who chose not to participate in this activity, the swimming
pool was another option or the arts
and craft booth. Daryle Palmer, Principal of McGaugh Elementary, and Corey
Dubin, President of Committee of Ten Thousand (COTT), made a special appearance at our retreat to lead an advocacy presentation touching on the subject of building self-reliance in your child in order to successfully navigate the
school system, insurance companies, and the medical community. The theme
dinner, coordinated by Melissa Franzen & Judy Mangione, had children and
adults alike, dressing up as their favorite super hero while others detailed their
favorite memories of camp. After the amazing dinner brought to you by head
chef John Bard, the Foundation hosted its own “Hemophilia Foundation’s Got
Talent,” where you could showcase your amazing talent on stage for the chance
of a lifetime. So Long Feathered Friend band and Rachael Lynn provided live
entertainment throughout the evening.
The Family Retreat is a program geared towards the bleeding disorders community and creates an opportunity for
these individuals and families to come
together and share their concerns in a
fun-filled weekend designed not only
to lend support, but to provide an
opportunity to learn coping skills that
will help them deal with hemophilia
more effectively, from both a physical
and psychological perspective. We
could not have organized this retreat
without some help from our sponsors:
Baxter, Bayer Healthcare, CSL Behring, Novo Nordisk, Factor Support
Network Pharmacy, Coram, Philip
and Aida Leone, Catherine Leone and
Keith Lehmann. Thank you to all the
individuals and families who attended
our Family Retreat and we hope to
see you again next year!
Retiro Familiar 2010
El Retiro Familiar de La Fundación de Hemofilia del Sur de California 2010
tomo lugar el fin de semana de septiembre 10-12 en el Wilshire Boulevard
Temple Camps & Conference localizado en hermoso Malibu, CA. Fue una
huida como ninguna otra para más de 200 familias y miembros de la comunidad mientras pudieron tomar parte de un campamento lleno de energía y
emoción. Al entrar al área del campamento, familias fueron bienvenidas por
un juego de béisbol, dirigido por Ivan Sada. Con rompe hielo como Bingo Humano, miembros de la comunidad tuvieron la oportunidad de conocer y saludar
con otros hemofílicos y familias con hemofilia mientras disfrutaban música en
vivo por Kaylee Score y su banda musical. Los eventos de la primera noche
concluyeron con deliciosos postre s’mores en seguida de la fogata
El segundo día del retiro familiar estuvo lleno de actividades y entretenimiento
para durar para toda una vida. El Equipo Hemofilia de la Fundación Nacional
de Hemofilia se unió mientras se encargaban de juegos y animaban a los
jóvenes a vivir una vida activa. Mientras tanto, los hombres fueron a la playa
y una caminata en la naturaleza con increíbles vistas de la Playa de Malibu,
una oportunidad para padres y hombres adultos de la comunidad para unirse.
La mujeres, disfrutaron una sesión de yoga silenciosa y tranquila hecha por
instructo Jennifer Banando. Después de las actividades de la mañana, todos
se reunieron para disfrutar de un almuerzo Bar-b-que sobre el campo mientras
Fulcrum Adventures Inc. Empezó a arreglar la pared de piedras para ascender y actividad de lazos. Todos los niños rápidamente terminaron su comida
mientras esperaban su turno en la línea para hacer la actividad del día.
Para aquellos que prefirieron no participar en esta actividad, la piscina fue otra
opción o la mesa de artes. Daryle Palmer, el Director de McGaugh Elementary, y Corey Dubin, Presidente del Comité de Diez mil (COTT), hicieron una
presencia a nuestro retiro para hacer una presentación de advocación tocando
en el tema de crear auto-confianza en su niño para poder navegar el sistema
escolar en una forma exitosa, compañías de seguro, y la comunidad medica.
El tema de la cena, coordinada por Melissa Franzen & Judy Mangione tenia
a los niños y adultos vestidos como su súper héroe favorito mientras mucho
detallaban sus recuerdos favoritos del campamento. Después de la gran cena,
hecha por el gran Chef John Bard, la Fundación fue anfitrion del primer “La
Fundacion de Hemofilia Tiene Talento”, donde participantes podían demostrar
su fantástico talento. Así que Long Feather Friend y Rachel Lynn tomaron
parte del entretenimiento en vivo por toda la noche.
El retiro familiar es un programa hecho para la comunidad con enfermedades
sanguíneas y crear una oportunidad para estos individuos y familias a unirse
juntos y compartir sus preocupaciones, en un fin de semana lleno de diversión
diseñado no solo para prestar apoyo, pero para proveer una oportunidad para
aprender habilidades para sobrepasar y ayudar las cuales le ayudaran a lidiar
con el cuidado de hemofilia mas efectivamente, de ambos la perspectiva física
y psicológica. No podríamos haber organizado este retiro sin la ayuda de
nuestros patrocinadores: Baxter, Bayer Healthcare, NovoNoridsk, Factor Support Network, Coram, CSL Behring, Philip y Aida Leone, Catherine Leone y
Keith Lehman. Gracias a todos los individuos y familias que vinieron a nuestro
Retiro Familiar y esperamos verlos de nuevo el próximo año.
The Hemophilia Foundation of Southern California is pleased to
announce the winners of the 2010-2011 Christopher Pitkin Scholarships. This year’s winner is Jonathan Michael Ramirez of Lancaster,
California. Jonathan attends Antelope Valley College, where he is
earning an Associates Degree in his chosen area of study: Astronomy.
His career goal is to become an astronomer, and it has been a lifelong
dream for him. “Ever since I was a little kid, the stars and planets have
always been something that caught my attention,” Jonathan writes. As
a person with hemophilia, he does not let his disorder get in the way
of his dreams. “I also have a little brother with this condition, and he
looks up to me a lot. So I want to show him that anything is possible if
you put your mind to it.”
The Foundation received forty five scholarship applications, and was
able to award twelve additional honorable mention scholarships to the
following students: Rosaura Cisneros of Los Angeles, John Paul Kim
of Los Angeles, Sabrina Ortiz of Whittier, Sarah Jarboe of Redlands,
Pablo Alejandro Sosa or Fairbanks Ranch, Carl Schwarz of Three
Rivers, Kristi Friesen of San Francisco, Stephen Pascucci of San
Diego, Jetty Sapinoso of San Diego, Brittany Sonnenberg of Trabuco
Canyon, Emma Byrne of Cotati, and Giovanna Rodriguez of Santa
The scholarship fund has been created to honor the memory of Chris
Pitkin, health policy consultant, advocate, leader in the hemophilia
community, former president of the Foundation, and a beloved friend
of many.
Chris was known for his clear-headed ability to set goals and priorities
and to pursue them to attainment. Many of those who knew him benefited from his encouragement to set their own goals, move forward
and further develop their own potential. In keeping with his beliefs
and his actions, this scholarship is awarded to individuals who demonstrate these principals of goal-orientation and motivation. Scholarship
awards of are based primarily upon the applicants’ statements of goals
and intentions, with secondary consideration given to the location
(priority-Southern California); progress and school, community contributions, extent of need, etc.
Scholarships are available to members of the hemophilia community:
men and women with hemophilia or other bleeding disorders, spouses/
partners, parents, children and siblings. In particular, persons living
with hemophilia and HIV and their family members are encouraged to
apply. This year’s scholarships will be awarded for education following high school (college, technical/trade training) for the 2010-2011
school year.
La Fundación de Hemofilia del Sur de California esta orgulloso en
anunciar los ganadores la Beca de Christopher Pitkin del 2010-2011.
Este año el ganador es Jonathan Michael Ramirez de Lancaster, CA
. Jonathan es un estudiante en Antelope Valley College, donde el
adquirirá un Grado Asociado en su carrera específica: Astronomía. La
meta de su carrera es astrónomo, y ha sido un sueño de toda su vida.
“Desde que Yo era niño, las estrellas y los planetas siempre me causaban curiosidad,” Jonathan escribe. Como un paciente con hemofilia ,
el no permite que su enfermedad sea una barrera de sus sueños. “ Yo
también tengo un hermano menor con esta condición y el me admira
, así que le quiero demostrar que cualquier cosa es posible si uno se
La Fundación recibió muchas solicitudes para la beca, y pudo premiar
a doce ganadores mas: Rosaura Cisneros de Los Angeles, John Paul
Kim de Los Angeles, Sabrina Ortiz de Whittier, Sarah Jarboe de
Redlands, Pablo Alejandro Sosa de Fairbanks Ranch, Carl Schwarz
de Three Rivers, Kristi Friesen de San Francisco, Stephen Pascucci
de San Diego, Jetty Sapinoso de San Diego, Brittany Sonnenberg de
Trabuco Canyon, Emma Byrne de Cotati, y Giovanna Rodriguez de
Santa Maria.
La beca fue creada en honor y conmemoración de Chris Pitkin, un
consultante y apoyante de póliza de salud, un líder en la comunidad
hemofílica, previo presidente de la fundación y apreciado amigo de
Chris fue conocido por su habilidad de hacer metas y prioridades y
seguirlas hasta atenerlas. Muchos de los que lo conocían beneficiaron de su animo e hicieron sus propias metas, siguieron adelante, y
mejoraron su potencial. En mantener sus creencias y sus acciones,
esta beca se le premiara a un individuo que demostró sus principios y
motivación y orientación de metas. Premios de la becas serán basados
principalmente por las declaraciones en la solicitud, con consideración
secundaria al lugar (prioridad en el Sur de California), progreso y
escuela, contribuciones a la comunidad, y necesidad, etc.
Becas están disponibles para miembros de la comunidad hemofílica: hombres y mujeres con hemofilia u otra enfermedad sanguínea,
esposas/esposos, padres, hijos y hermanos o hermanas. En particular,
personas viviendo con hemofilia y VIH y sus familiares se les anima a
que apliquen . La Becas de este año serán premiadas para la educación siguiendo la Secundaria (Universidad, Entrenamiento Técnico)
para el año escolar de 2010-2011.
Carl Schwarz is currently attending California State University Channel Islands, majoring in Environmental Science/Resource
Management. His goals are to finish college and work for the National Park Service or a similar federal agency.
“I am pleased to be acknowledged by the Hemophilia community, as I believe this sense of community has truly shaped my goals
and the person I am today. Growing up, I was lucky enough to experience a side of Hemophilia that exhibited constant strength.
My father was always so kind and caring to anyone he encountered in his life, which shaped the same drive within myself. I hope to
peruse a career in the health care field where I am able to help others as my parents always did in their own lives.” - Emma K. Byrne
“As a pediatric patient who also has small tumors in her brain, my goal is to make a positive impact on the lives of other chronically
ill children and encourage them.” – Sabrina Ortiz. Sabrina is attending Whittier College where she plans to major in child development. She works with preschool students through the Jumpstart Program and is a member of the Children’s Hospital of Orange
County’s leadership board.
As a 23 year old who stepped into the real world at a young age, away from his home to experience life and its responsibilities as an
adult, Jetty Sapinoso is on the path to accomplish his goals in establishing a career in the medical field. He is working to obtain a
degree in the radiologic technology field. “Distracted by friends, nightlife and the party scene, I am proud to say that I am
one of the few of my group of friends striving to accomplish my goals.”
Rodriguez is an eighteen-year-old student who currently attends Santa Barbara Business College. She is working to obtain an Associates of Science degree in Pharmaceuticals to become a pharmacy technician. Her dream is to earn a PHD in Pharmaceuticals
and work at the best hospital in the world. “That hospital will be Cottage Hospital in Santa Barbara, CA,” Giovanna says.
Sarah Jarboe is currently a freshman at California Baptist University as a Kinesiology major with an emphasis in Sports Medicine.
She hopes to graduate in three years and then move on to get either a master’s in Athletic Training or a doctorate in Physical
Therapy. Having experienced numerous sports injuries herself, she wants to be able to provide the same inspiration and encouragement that her orthopedic surgeon and physical therapist gave her. Sarah is passionate about athletes and their ability to do what
love and she can’t wait to step into the arena of sports medicine.
JohnPaul Kim is attending El Camino College, with plans to transfer to a 4-year university. “Having hemophilia had me in rebellion
during my adolescent years. I am blessed to able to turn my life around and get back on track! I truly believe I can achieve
great things in life if I put my mind to it. I would like to encourage all young friends to stay in school and stay focused.”
you so much for the scholarship I received from the Hemophilia Foundation of Southern California. I am very motivated to
reach my goal with my university studies. My plan is to finish college and graduate from DeVry University with a degree in Computer Science, specializing in the medical field. My desire is to use my knowledge and give back to my community.” –Pablo Sosa
Brittany Sonnenberg is 18 years old and is attending San Francisco State University. She plans to major in Social Work. Her favorite thing to do is go to concerts and shows of her favorite bands on the weekends with her friends. She also loves to travel and hopes
this summer she can visit Africa.
Kristi Friesen is pursuing her B.S. in nutritional sciences at Bastyr University in Seattle. She is planning on a career in Clinical Dietetics,
and possibly opening a restaurant someday. Her focus is using whole foods nutrition to strengthen the immune system. Her
two brothers have hemophilia and she is a carrier. Kristi enjoys yoga, cooking, movies and walking her English Mastiff.
Plants Help Prevent Inhibitors and Allergic Reactions
Using genetically modified plants, researchers from two Florida universities are developing a technique that could help prevent treatment-related complications such as inhibitors,
an immune reaction that neutralizes infused factor, and anaphylaxis, severe allergic reactions, in people with hemophilia B. The lead authors of the study were Dheeraj Verma,
PhD, Department of Molecular Biology and Microbiology, College of Medicine, at the
University of Central Florida (UCF) in Orlando and Babak Moghimi, MD, Department
of Pediatrics, College of Medicine, at the University of Florida (UF) in Gainesville.
Inhibitors result in approximately 25% of patients with hemophilia A and up to 4% of
patients with hemophilia B. Clinicians often use immune tolerance (IT) induction to
eliminate an inhibitor. By administering daily doses of factor over time, the body begins
to tolerate the therapy. The process is similar to desensitization therapy used to treat food
and environmental allergies. The technique is less effective in individuals with hemophilia
B than in those with hemophilia A. In addition, because of the large amounts of factor
used, IT becomes very expensive. The approach being developed by Verma, Moghimi and
colleagues could be more cost effective.
The researchers used a so-called “gene gun” to insert the genetic material that manufactures factor IX (FIX) into chloroplasts, the energy production centers of plants. They then
fed the modified plants to mice with hemophilia B for a prolonged time period. Insulated
from digestive acids and enzymes by durable plant cell walls, the FIX protein traveled
through the stomach and into the small intestines. Once inside the small intestines, bacteria then broke down the cell walls and released the protein, which induced tolerance by
the immune system.
“We have made them develop tolerance, and removed the allergic part of this treatment,”
said coauthor Henry Daniell, PhD, a Pegasus professor and University Board of Trustees
Chair in the College of Medicine at the UCF.
Later the mice were infused with factor product, which triggered little to no inhibitor
responses and no anaphylactic events. “I think this is a milestone - nobody has previously achieved such levels of robust immune tolerance by any means using a noninvasive
procedure,” explained Thierry Vandendriessche, PhD, an associate professor of medicine
at the University of Leuven in Belgium, who was not involved in the study. He is president
of the European Society of Gene Cell Therapy.
Investigators will conduct follow-up studies to test the approach in mice with hemophilia
A and then carry out trials in humans using lettuce to produce the therapeutic proteins.
“We’re hoping that our research will, in the future, result in better and more cost-effective
therapies,” said study co-author Roland Herzog, PhD, an associate professor of pediatrics,
molecular genetics and microbiology in the UF College of Medicine and a member of the
UF Genetics Institute. Herzog received the National Hemophilia Foundation’s Career
Development Award in 2000.
The study, “Oral Delivery of Bioencapsulated Coagulation Factor IX Prevents Inhibitor
Formation and Fatal Anaphylaxis in Hemophilia B Mice,” was published in the April 2010
issue of the Proceedings of the National Academy of Sciences.
Source: e! Science News, March 30, 2010
Plantas ayudan a Prevenir Inhibidores y Reacciones Alérgicas
Usando plantas genéticamente modificadas, investigadores de dos universidades de Florida
están desarrollando una técnica que puede ayudar a prevenir complicaciones relacionadas
al tratamiento tales como inhibidores, una reacción inmuta que neutraliza el factor usado,
y anafilaxis, reacciones alérgicas severas, en personas con hemofilia B. El autor líder del
estudio fue Dheeraj Verma, PhD del Departamento de Biología Molecular y Microbiología, Colegio de Medicina, en la Universidad de Florida (UFC) en Orlando y Babk
Moghimi, MD Departamento de Pediatría, Colegio de Medicina, en la Universidad de
Florida (UF) en Gainesville.
Resultado de Inhibidores en aproximadamente 25%de los pacientes con Hemofilia A y
hasta un 4% de pacientes con Hemofilia B. Clínicos a menudo usan inducción tolerancia
inmunológica (IT) para eliminar un inhibidor. Al administrar la dosis diariamente de
factor durante el tiempo, el cuerpo comienza a tolerar la terapia. El proceso es similar a la
terapia de desensibilizar usada para tratar alergias de comida o al ambiente. La técnica es
menos efectiva en individuos con hemofilia B que en aquellos con Hemofilia A. Adicionalmente, por la grande cantidad de factor, IT se es muy costosa. El plan de acción que esta
siendo desarrollado por Verma, Moghimi puede que sea de mejor costo.
Los investigadores usaron un tal llamado “gene gun” (gene pistola) para introducir el
material génico que fabrica factor IX (FIX) en el cloroplasto, los centros de producción de
energías de la plantas. Luego le dieron las plantas modificadas a los ratones con hemofilia
B por un periodo prolongado. Aislado por ácidos digestivos, y encimas por las paredes
durables de la planta, la proteína de FIX paso por el estomago hacia el intestino delgado.
Ya que esta en el intestino delgado, la bacteria descompone las paredes celulares y liberan
la proteína, la cual indujo tolerancia al sistema inmuno.
“Los hemos hecho que desarrollen tolerancia, y eliminado la parte alérgica de este trata-
miento,” dijo uno de los autores Henry Daniell, PhD, un profesor Pegasus y Cabeza de la
Junta de Fideicomisarios en el Colegio de Medicina de UCF.
Después, a los ratones se les dio una infusión de producto de factor, el cual ha disparado
poco a ninguna respuesta inmunológica y ningún evento anafiláctico. “pienso que esto es
un gran éxito- nadie previamente ha podido lograr tales niveles de tolerancia inmunológica
robusta, de ningún otra forma sin usar formas no invasivas” explico Thierry Vandendrissche, PhD. Un profesor asociado de medicina de la Universidad de Leuven in Bélgica,
quien no estaba involucrado en el estudio. El es presidente de la Sociedad Europea de
Terapia Génica.
Investigadores harán estudios continuos para examinar el enfoque en ratones con Hemofilia A y luego hacer las investigaciones en humanos usando lechuga para producir las
proteínas terapéuticas.
“Esperamos que nuestras investigaciones , en el futuro, nos darán resultados de mejores
terapias y menos costosas y mas efectivas,” dijo uno de los autores Roland Herzog, PhD,
un profesor asociado de pediatría, genética molecular y microbiología en el Colegio UF de
Medicina y un miembro de UF Instituto Genético. Herzog recibió el premio de Desarrollo
de Carrera en el 2000 de la Fundación Nacional de Hemofilia.
El estudio, “Entrega Oral Bioencapsulado de Coagulación de Factor IX Previene
Formación de Inhibidor y Anafilaxis Fatal en Ratones con Hemofilia B” fue publicado en
volumen de abril del 2010 de Procedimientos de la Academia Nacional de Ciencias.
Source: e! Science News, March 30, 2010
Helping families with bleeding disorders since 1994
FSN is a specialty pharmacy dedicated to providing
comprehensive care and support to persons with hemophilia and
other bleeding disorders. Our services include medication therapy
management, coordination of care and ancillary supplies. We provide
our clients with support and advocacy resources. FSN maintains inventory
of all factor therapies and assay choices to minimize delays in your care. We
promote positive health outcomes helping you to achieve your highest quality of life.
• 24 Hour On-Call Support • Next Day Delivery
• Infusion Log Support • Client-Centered Services
• Education • Scholarships • Community Support
Client Services Representatives in Your Area
Randy DeSantis 805-402-5952
[email protected]
* Edmund Merino 909-709-1083
[email protected]
* English & Spanish Speaking
* FSN is an in-network factor provider for GHPP, CCS and Tri-Care
Hemophilia Foundation of
Southern California
Oakland, CA
Permit No. 1204
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]
2011 Calendar of Events
February 16-18 March 13-14 April 2 April 15-18 August 4 & 9 October 21-23 November 10-12 Washington Days & Leadership Weekend, Washington, DC
Region IX HTC Conference 2010, Sacramento, CA
HFSC Annual Family Information Day, Location TBA
HFA Annual Educational Symposium, Louisville KY,
Camp Blood Brothers and Sisters, Lake Hughes, CA
Family Retreat, Malibu ,CA TBA
NHF Convention, Chicago, IL
Dates & locations are subject to change
Hemophilia Foundation Southern California
6720 Melrose Ave., Los Angeles, CA 90038
Telephone: (323) 525-0440 Fax: (323) 525-0445
Gerry Green and Linda with big stick winner

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