REGISTRATION FORM
Thank you for your interest in participating in our Food for Though program on October 30, 2023 at Seasons 52 (UTC Mall). Capacity is limited, therefore only register if you are certain you can attend this program.
All posts by Nooshin Kosar
BioMarin
WHO IS BIOMARIN?
BioMarin is a world leader in developing and commercializing innovative therapies for rare diseases driven by genetic causes. Visit www.biomarin.com to learn more.
WEBSITE
Learn more about Gene Therapy: https://www.hemdifferently.com
BROCHURE
CONTACT US
Billy Duckworth
Hemophilia Sr. Account Manager
E: Billy.Duckworth@bmrn.com
P: 949-537-1063
A Farewell from Dr. Thornburg
A Farewell Letter from Dr. Thornburg
Dear San Diego Bleeding Disorders Community,
It is with mixed emotions that I step down as the Director of the Hemophilia and Treatment Center (HTTC) at Rady Children’s Hospital San Diego. I accepted the position of Chief Medical Research Officer, Division of Blood Diseases and Resources (DBDR) effective April 21, 2024. In this role I will provide leadership, strategic planning, and detailed oversight and management for research on the causes, prevention, and treatment of blood disorders so that people with blood disorders have better treatments and quality of life. I will really miss this community but hope to stay engaged at local events.
I am transitioning the leadership of the HTTC to an amazing group of physicians.
I hope our paths will cross again. Wishing you good health and happiness.
Best wishes,
Dr. Thornburg
Hilda Ding, MD MS: Medical Director and overall HTTC Director
Dr. Hilda Ding is a pediatric hematologist/oncologist at Rady Children’s Hospital-San Diego and an assistant clinical professor of pediatrics at UC San Diego School of Medicine. She is board certified in pediatrics and board eligible in pediatric hematology/oncology.
After attending medical school at State University of New York – Stony Brook University School of Medicine, Dr. Ding completed her pediatric residency at the University of South Carolina, Palmetto Health Children’s Hospital. She then completed her pediatric hematology/oncology fellowship at Case Western Reserve University, Rainbow Babies & Children’s Hospital. During her fellowship training, she developed an academic interest in bleeding and clotting disorders and decided to complete an additional year of clinical training in hemostasis and thrombosis.
Dr. Ding is committed to caring for children and adolescents with a wide variety of disorders in pediatric hematology/oncology, with special interests in hemostasis, thrombosis and bone marrow failure. She directs the Hematology/Gynecology clinic to provide multi-disciplinary care for adolescent females and girls with abnormal menstrual bleeding.
She also loves sharing her interests with medical students, residents and fellows.
Dr. Ding is fluent in Cantonese. Outside of work, Dr. Ding enjoys spending time outdoors with her husband and their dogs.
Kelly Bush, MD: QI Lead
Dr. Kelly Bush is a pediatric hematologist/oncologist at Rady Children’s Hospital-San Diego and an assistant clinical professor of pediatrics at UC San Diego School of Medicine. She is board certified in general pediatrics and pediatric hematology/oncology.
After attending medical school at New York Medical College, Dr. Bush completed her pediatric residency and pediatric hematology/oncology fellowship at the University of Wisconsin, Madison. During her fellowship, she developed a particular interest in bleeding and clotting disorders, which led her to pursue an additional year of clinical training in pediatric hemostasis and thrombosis at Rady Children’s Hospital and UC San Diego.
Dr. Bush enjoys caring for patients with a wide variety of disorders in pediatric hematology/oncology with special clinical interests in hemostasis and thrombosis. She is a leader of the division’s Quality Improvement (QI) Committee and serves as the advisor for fellow-led quality improvement projects in pediatric hematology/oncology and QI lead for the Hemophilia and Thrombosis Treatment Center. Dr. Bush also enjoys teaching medical students, residents, and fellows.
When not working, Dr. Bush enjoys spending time with her family and friends, traveling, and participating in a variety of outdoor activities.
Julie Jaffray, MD MS: Director of Hemostasis and Thrombosis Research
Dr. Julie Jaffray is a board-certified pediatric hematologist/oncologist at Rady Children’s Hospital-San Diego and a Clinical Assistant Professor in the Department of Pediatrics at UC San Diego. Her passion is caring for children and adolescents with blood disorders, including bleeding disorders and clotting disorders.
Dr. Jaffray received her medical degree from Flinders University of South Australia. She completed her pediatric residency at the University of Massachusetts School of Medicine and her pediatric hematology/oncology fellowship at Memorial Sloan Kettering Cancer Center/New York Presbyterian Weill Cornell. This was followed by two additional years of training as a hemostasis and thrombosis specialty fellow at Children’s Hospital Los Angeles, where she later became the thrombosis program director and associate clinical director of hematology.
She is the Chair of the Anticoagulation Stewardship and Venous Thromboembolism Management Committee at Rady Children’s. She is also the President of the Thrombosis and Hemostasis Society of North America.
Her research is focused on identifying risk factors that cause blood clots in children and determining the best way to prevent blood clots. Dr. Jaffray leads a 48-institution, national consortium dedicated to preventing and treating blood clots in children, called the CHAT Consortium (www.chatconsortium.org). Her other passion is caring for adolescent females and girls with heavy menstrual periods and bleeding disorders.
Dr. Jaffray’s work is currently funded by the National Institutes of Health, with past funding from the Hemostasis and Thrombosis Research Society.
Outside of work, she enjoys spending time with her husband, two young daughters and their Bernese Mountain Dog, Sally.
UCSD HTTC: Lunch & Learn (June 13)
Register for Lunch & Learn
UC San Diego Health Hemophilia and Thrombosis Treatment Center (HTTC) is hosting their next Lunch & Learn on Thursday, June 13, 2024.
Advocacy Forum
Learn to better advocate for yourself personally, professionally and politically. Join us for our annual Advocacy Forum. Attendees will have the opportunity to learn about what advocacy is, the importance of being a self-advocate, empowerment, how to politically advocate at the local, state and national levels and current state of health insurance in California.
This year’s event will include a session on Infusion Training provided by our local Hemophilia Treatment Centers!
*Our programs and events are open to individuals with a bleeding disorder, carriers, immediate family members/caregivers living in HASDC’s service area.
DATE | TIME (Fecha | Hora)
Saturday, February 17, 2024 | 9:00AM – 2:00PM
Location: San Diego Zoo Safari Park
Venue: Kijamii Overlook (CLICK HERE FOR MAP)
San Diego Zoo Safari Park
15500 San Pasqual Valley Rd.
Escondido, CA 92027
Parking: Complimentary parking for ONE car per registered family.
Weather: Sunny/63 (please plan attire accordingly; venue is covered but has open walls)
CHILDCARE (cuidado de ni´ños)
Complimentary childcare will be provided for children ages 3-12 only. Children will participate in a tram tour. Young adults 13 and older are expected to participate in the educational program. Children under 3 are welcome to stay with their parents or please make alternate arrangements.
Please inform HASDC in advance if your child has any special needs (behavioral, educational, dietary, etc.) and we will do our best to make accommodations.
AGENDA
REGISTRATION (Inscripción)
Registration for this event is now closed.
We are unable to take late registration requests.
*WAITLIST
Please note: if you are registering and live outside of HASDC’s service area, you will be placed on a waitlist. If space is available, we will reach out to you via email to confirm registration for this event.
Please note: if you are not currently in our database, you will receive an email to complete our Member Database form before your registration can be confirmed.
SPONSORS (Patrocinadores)
Thank you to our sponsors for making this program possible.
NHF’s Washington Days
The National Hemophilia Foundation (NHF) will be hosting its annual Washington Days advocacy event as a virtual experience this year.
NHF’s Washington Days is an opportunity for people affected by inherited blood disorders to advocate for issues that are important to them. In 2021, Washington Days had more than 400 volunteer advocates from 45 states that met with legislators and staff to discuss federal funding for bleeding disorder programs and support policies that increase affordability of coverage and access to care.
Registration opportunities and Issues will be announced soon.
DATE | LOCATION
March 8-10, 2023 | Washington D.C.
REGISTRATION
Please click here for more information on how to register.
QUESTIONS
Please address any additional registration or housing questions to:
Alla Vaynshteyn
NHF Meetings Specialist
avaynshteyn@hemophilia.org
For any other concerns, please contact:
advocate@hemophilia.org
Saturday Sweat
EVENT CANCELLED
Join us this Bleeding Disorders Awareness Month for our Saturday Sweat: an HASDC Mindful Movement event. Our Saturday Sweat event is open to individuals with a bleeding disorder, their immediate family members and friends living in HASDC’s service area.
Please note: Attendees must be 15-years old or older to attend.
DATE | TIME (Fecha | Hora)
THIS EVENT HAS BEEN CANCELLED
Location: F45 Training Sorrento Valley
F45 Training Sorrento Valley
6765 Mira Mesa Blvd. Suite 148
San Diego, CA 92121
PROGRAM LANGUAGE (Idioma del programa)
Presented in English | Presentado en ingles
TOPIC (Tema)
Join us for our Saturday Sweat event as we join F45 Training Sorrento Valley for a HIIT style workout. Bring a friend and come workout with us! Moving the body not only improves joint health, but your overall health as well.
“Heroes Hollywood Workout“
Heroes Hollywood is a 60-minute session designed to get your weekend off to a great start! This workout is a hybrid workout which will consist of 18 stations where you will have 40 seconds of work, 15 seconds of rest, 1 set at each station and 3 laps through the room. There will be a 45-second hydration break between each lap.
SPEAKERS (Presentadores)
Peter Aguero, PT, DPT, RMSK
Physical Therapist III, UC San Diego Health Hemophilia & Thrombosis Treatment Center
Rob MacDonald, LMT
Licensed Massage Therapist, UC San Diego Health Hemophilia & Thrombosis Treatment Center
AGENDA (Agenda)
11:45AM Arrive at F45 Training Sorrento Valley (please arrive early to complete waivers)
12:00PM Heroes Hollywood Workout Begins (no late arrivals)
1:00PM Post Workout Refreshments, PT Demonstration, Massage Therapy benefits
1:30PM Event Concludes
REGISTRATION (Inscripción)
THIS EVENT HAS BEEN CANCELLED
*WAITLIST
Please note: if you are registering and live outside of HASDC’s service area, you will be placed on a waitlist. If space is available, we will reach out to you via email to confirm registration for this event.
Please note: if you are not currently in our database, you will receive an email to complete our Member Database form before your registration can be confirmed.
SPONSOR (Patrocinador)
Thank you to our supporter for partnering with us to make this event possible.
Food for Thought
Celebrate World Hemophilia Day with Us!
Join us for Food for Thought: an HASDC Educational Dinner. Our Educational Dinner Programs are open to all individuals with a bleeding disorder and their immediate family members living in HASDC’s service area.
DATE | TIME (Fecha | Hora)
Wednesday, April 17, 2024 | 6:00PM – 8:00PM
Location: Filippi’s Pizza Grotto Kearny Mesa
Filippi’s Pizza Grotto Kearny Mesa
5353 Kearny Villa Rd.
San Diego, CA 92123
PARKING
Public parking in lot outside of restaurant.
PROGRAM LANGUAGE (Idioma del programa)
Presented in English | Presentado en ingles
TOPIC (Tema)
“HEMLIBRA with Genentech”
Join us as we discuss HEMLIBRA and hear from Gabe, a Patient Ambassador as he shares his story.
SPEAKERS (Presentadores)
Gabe
Patient Ambassador
Brian Taylor Garcia
HEMLIBRA Senior Account & Community Manager
Genentech
AGENDA (Agenda)
6:00 PM Arrive at Filippi’s Pizza Grotto (please arrive on time)
6:15 PM Welcome & Program Begins
8:00 PM Program Concludes
REGISTRATION (Inscripción)
Registration for this program will close on Monday, April 15, 2024
*WAITLIST
Please note: if you are registering and live outside of HASDC’s service area, you will be placed on a waitlist. If space is available, we will reach out to you via email to confirm registration for this event.
Please note: if you are not currently in our database, you will receive an email to complete our Member Database form before your registration can be confirmed.
SPONSOR (Patrocinador)
Thank you to our sponsor for partnering with us to make this educational program possible.
Food for Thought
Join us for an afternoon tea as we celebrate the women in our lives this May. Come dressed up ready for afternoon tea! Our Educational Programs are open to all individuals with a bleeding disorder and their immediate family members living in HASDC’s service area.
This program is for Women only (must be 16+) in the San Diego bleeding disorders community.
DATE | TIME (Fecha | Hora)
Saturday, May 25, 2024 | 12:30PM – 3:00PM
Location: The Britannia Tearooms
The Britannia Tearooms
2323 Midway Dr.
San Diego, CA 92110
PROGRAM LANGUAGE (Idioma del programa)
Presented in English | Presentado en ingles
TOPIC (Tema)
Join us for an afternoon tea as we celebrate the women in our lives this May. Come dressed up ready for afternoon tea!
“Women’s Empowerment“
This HELLO Talk explores women’s awareness and advocacy, how bleeding disorders uniquely impact women’s health, and ways in which women function as caregivers for loved ones with bleeding disorders.
SPEAKERS (Presentadores)
Annabelle Garcia
Community Education Specialist, Takeda
AGENDA (Agenda)
12:15 PM Arrive at The Britannia Tearooms
12:30 PM Welcome & Program Begins
3:00 PM Program Concludes
REGISTRATION (Inscripción)
Registration for this program will close on Friday, May 17, 2024
*WAITLIST
Please note: if you are registering and live outside of HASDC’s service area, you will be placed on a waitlist. If space is available, we will reach out to you via email to confirm registration for this event.
Please note: if you are not currently in our database, you will receive an email to complete our Member Database form before your registration can be confirmed.
SPONSOR (Patrocinador)
Thank you to our sponsor for partnering with us to make this educational program possible.
Food for Thought
Join us for Food for Thought: an HASDC Educational Dinner. Our Educational Dinner Programs are open to all individuals with a bleeding disorder and their immediate family members living in HASDC’s service area.
DATE | TIME (Fecha | Hora)
Wednesday, June 5, 2024 | 6:00PM – 8:00PM
LOCATION
Slater’s 50/50
2750 Dewey Rd. #193
San Diego, CA 92106
PARKING
Public parking in lot outside of restaurant.
PROGRAM LANGUAGE (Idioma del programa)
Presented in English | Presentado en inglés
TOPIC (Tema)
“Deciding If You’re Camp Ready”
When we think about sending our children to camp, many of us wonder, “are they ready to be on their own? Will they have friends? Will they infuse on schedule? Who will look out for them? What happens if…?” We’ll discuss these common fears and provide an in-depth look at the camp environment, including key elements such as socialization, self-advocacy, and support resources.
SPEAKER (Presentador)
Cynthia Chavez
Community Relations & Education Core Manager, Sanofi
AGENDA (Agenda)
5:45 PM Arrive at Slater’s 50/50 (please arrive on time)
6:00 PM Welcome & Program Begins
8:00 PM Program Concludes
REGISTRATION (Inscripción)
Registration for this program is now closed.
Please note: if you are not currently in our database, you will receive an email to complete our Member Database form before your registration can be confirmed.
WAITLIST POLICY
If you are registering and live outside of HASDC’s service area, you will be placed on a waitlist. If space is available, we will reach out to you via email to confirm registration for this event.
SPONSOR (Patrocinador)
Thank you to our sponsor for partnering with us to make this educational program possible.
