Category Archives: Events

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 bleeding disorders to advocate for issues that are important to them. In 2020, Washington Days had more than 450 volunteer advocates from 45 states that met with legislators and staff to discuss federal funding for bleeding disorder programs and access to Skilled Nursing Facilities (SNFs). The issues and priorities for 2021 Washington Days will be announced later this year.

DATE

March 1-5, 2021 | Time TBD

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

Educational Dinner Program

Join us virtually for an evening of education. Our Educational Dinner Programs are open to all patients with a bleeding disorder and their immediate family members.

**Bleeding disorder participants and their immediate family, living in our service area, will receive a $50 Grubhub gift card from HASDC to purchase a meal on a later date. 

DATE | TIME (Fecha | Hora)

Thursday, March 25, 2021 | 6:00PM – 7:30PM

PROGRAM LANGUAGE (Idioma del programa)

Presented in English | Presentado en inglés

TOPIC (TEMA)

Put Your Oxygen Mask on First: Self-care and Bleeding Disorders
After years of ignoring her own symptoms so she could focus on her son, Mily struggled when confronted with her own diagnosis of hemophilia. She got tired of feeling the need to hide it from others. Today, she encourages other women to ask themselves: “What do I need to do to take care of myself as well as my family?” Mily shares how you can better help others when you are stronger yourself.

SPEAKERS (Presentadores)

Denise Atkinson
Manager, Coagulation Products – CSL Behring

Milybet Montijo-Cepeda
Common Factors Speaker – CSL Behring
Mily knew about hemophilia from a young age because her father had severe hemophilia. Later, when her son was diagnosed, she began to question her own symptoms and was diagnosed with hemophilia as well. These days, Mily is devoted to advocating for her family, as well as others who face similar challenges.

AGENDA (Agenda)

5:50 PM Connect to Zoom link (make sure everything is working)
6:00 PM Welcome & Program Begins
6:45 PM Q&A
7:00 PM Program Concludes

REGISTRATION (Inscripción)

Registration for this program is now closed.

GRUBHUB GIFT CARDS (Tarjetas de regalo de Grubhub)

**Bleeding disorder participants and their immediate family, living in our service area, who register and are logged in for the full 1.5-hour program are eligible for a Grubhub gift card to purchase a meal on a later date. One gift card provided per family.

Our service area is San Diego and Imperial Counties. If there is availability, those living outside our service area may qualify; distributed in order based on registration date/time. 

SPONSOR (Patrocinador)

Thank you to our sponsor for partnering with us to make this educational program possible.

FREQUENTLY ASKED QUESTIONS

How do I join the webinar?
After you have registered via the HASDC website, a join webinar link will be emailed to you from HASDC. Please use the “Click Here to Join” link in that email.

What if I get disconnected or can’t login?
We will be actively troubleshooting throughout the web-conference. Text 619-325-9401 if you have any technical difficulties and we will try to help you get back into the web-conference. We encourage everyone to start logging in at 5:20 pm so that we have time to help you troubleshoot and you will still be eligible for the dinner.

How will I receive my dinner gift card?
HASDC will email you an e-gift card from GrubHub to be used to purchase a meal on a later date. Please note: gift cards will be sent to the email you used to register.

The Amazing Goosechase

In honor of World Hemophilia Day, 9-chapters throughout the country are partnering for The Amazing Goosechase: Bleeding Disorders Edition. This multi-chapter scavenger hunt will run from April 10-16. Winners will be announced on World Hemophilia Day, April 17, 2021

Goosechase is a virtual scavenger hunt in which participants compete in various missions. You can download the app to your phone to play. To complete a mission, you will select it from the list and follow the instructions to receive the allotted points. Some missions are answering questions, while others involve sharing photos or videos. Point amounts will vary. Each family that registers and completes at least one challenge will receive a $10 Amazon gift card. See below for other prizes. 

Due to limited registration spots, this event is open to HASDC’s *service area only. If you are interested in participating, but live outside of our service area, you will be placed on a waitlist and contacted on April 7 if your registration is accepted. 

DATE | TIME (Fecha | Hora)

April 10-16, 2021 | On Your Own

PARTNERING CHAPTERS

Show your San Diego pride as we challenge families from across the country. Our partnering chapters are as follows:

  • Bleeding Disorders Alliance of North Dakota
  • Florida Hemophilia Association
  • Hawaii Chapter of the National Hemophilia Foundation
  • Hemophilia Association of the Capital Area
  • Hemophilia Foundation of Northern California
  • Lone Star Bleeding Disorders Foundation
  • Midwest Hemophilia Association
  • Nebraska Chapter of the National Hemophilia Foundation

PRIZES

Overall Event Prizes

  • Drawing for (5) $100 gift cards: 90% – 100% of points completed
  • Drawing for (20) $50 gift cards: 75% – 90% of points completed
  • Drawing for (20) $25 gift cards: 50% – 75% of points completed

Local Chapter Prize
Participate and complete at least 80% of points and be entered in a drawing for a $50 Amazon gift card (HASDC participants only).

REGISTRATION

Please register by family. Once we receive your registration, you will receive a confirmation email containing the link to the game, and the password to register. Please note: registration spots are limited. 
Registration deadline is April 7, 2021.

Registration opens April 1st!

SPONSOR

Thank you to our sponsor for partnering with us to make this event possible.

FREQUENTLY ASKED QUESTIONS

How do I participate Goosechase?
After you have registered via the HASDC website, look for an email on April 8 from HASDC with your game code, password and details on how to participate in the Goosechase app.

How do I use the Goosechase app?
CLICK HERE to get instructions on how to download the Goosechase app, join the game and complete missions.

If I win, how will I receive my gift card?
HASDC will email you an e-gift card from Amazon. Please note: gift cards will be sent to the email you used to register.

What is HASDC’s service area?
Our service area is San Diego and Imperial Counties. If there is availability, those living outside our service area may qualify; registrations accepted in order based on registration date/time. 

Educational Dinner Program

 

Join us virtually for an evening of education. Our Educational Dinner Programs are open to those with a bleeding disorder and their immediate family members living in HASDC’s service area. 

**Bleeding disorder participants and their immediate family, living in our service area, will receive a $50 Grubhub gift card from HASDC to purchase a meal on a later date. 

DATE | TIME (Fecha | Hora)

Tuesday, April 13, 2021 | 6:00PM – 7:00PM

PROGRAM LANGUAGE (Idioma del programa)

Presented in English | Presentado en Inglés

TOPIC (TEMA)

Give it a Shot: A Different Type of Hemophilia A Therapy”
HEMLIBRA is a prescription medicine used for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, with Hemophilia A with or without factor VIII inhibitors. Join us as we learn more about HEMLIBRA.  

You will hear from Dr. Joanna Davis on the following:
– What is Hemlibra?
– What is the most important information I should know about Hemlibra?

SPEAKERS (Presentadores)

Joanna Davis, MD
University of Miami School of Medicine

Zachary
Hemlibra Ambassador

AGENDA (Agenda)

5:50 PM Connect to Zoom link (make sure everything is working)
6:00 PM Welcome & Program Begins
6:45 PM Q&A
7:00 PM Program Concludes

REGISTRATION (Inscripción)

Registration for this program is closed.

GRUBHUB GIFT CARDS (Tarjetas de regalo de Grubhub)

**Bleeding disorder participants and their immediate family, living in our service area, who register and are logged in for the full 1.5-hour program are eligible for a Grubhub gift card to purchase a meal on a later date. One gift card provided per family.

Our service area is San Diego and Imperial Counties. If there is availability, those living outside our service area may qualify; distributed in order based on registration date/time. 

SPONSOR (Patrocinador)

Thank you to our sponsor for partnering with us to make this educational program possible.

FREQUENTLY ASKED QUESTIONS

How do I join the webinar?
After you have registered via the HASDC website, a join webinar link will be emailed to you from HASDC. Please use the “Click Here to Join” link in that email.

What if I get disconnected or can’t login?
We will be actively troubleshooting throughout the web-conference. Text 619-325-9401 if you have any technical difficulties and we will try to help you get back into the web-conference. We encourage everyone to start logging in at 5:20 pm so that we have time to help you troubleshoot and you will still be eligible for the dinner.

How will I receive my dinner gift card?
HASDC will email you an e-gift card from GrubHub to be used to purchase a meal on a later date. Please note: gift cards will be sent to the email you used to register.

Educational Dinner Program

Join us virtually for an evening of education. Our Educational Dinner Programs are open to those with a bleeding disorder and their immediate family members living in HASDC’s service area. 

**Bleeding disorder participants and their immediate family, living in our service area, will receive a $50 Grubhub gift card from HASDC to purchase a meal on a later date. 

DATE | TIME (Fecha | Hora)

Tuesday, April 20, 2021 | 6:00PM – 7:00PM

PROGRAM LANGUAGE (Idioma del programa)

Presented in Spanish | Presentado en español

TOPIC (TEMA)

Pruéblo: Un tratamiento diferente para la hemofilia A
HEMLIBRA es un medicamento recetado que se utiliza como profilaxis de rutina para prevenir o reducir la frecuencia de hemorragias en adultos y niños, desde el nacimiento en adelante, con hemofilia A con o sin inhibidores del factor VIII. Usted escuchará de Maria, embajadora de Hemlibra y Angélica Flores sobre lo siguiente:
– ¿Qué es Hemlibra?
– ¿Cuál es la información más importante que debería saber sobre Hemlibra?

Give it a Shot: A Different Type of Hemophilia A Therapy”
HEMLIBRA is a prescription medicine used for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, with Hemophilia A with or without factor VIII inhibitors. Join us as we learn more about HEMLIBRA. You will hear from Marira, a Hemlibra Ambassador and Angélica Flores on the following:
– What is Hemlibra?
– What is the most important information I should know about Hemlibra?

SPEAKERS (Presentadores)

Angélica Flores, MSN, RN, PHN
Hemophilia Community Clinical Educator

Maria S.
Hemlibra Ambassador

AGENDA (Agenda)

5:50 PM Connect to Zoom link (make sure everything is working)
6:00 PM Welcome & Program Begins
6:45 PM Q&A
7:00 PM Program Concludes

REGISTRATION (Inscripción)

Registration for this program is closed.

GRUBHUB GIFT CARDS (Tarjetas de regalo de Grubhub)

**Bleeding disorder participants and their immediate family, living in our service area, who register and are logged in for the full 1.5-hour program are eligible for a Grubhub gift card to purchase a meal on a later date. One gift card provided per family.

Our service area is San Diego and Imperial Counties. If there is availability, those living outside our service area may qualify; distributed in order based on registration date/time. 

SPONSOR (Patrocinador)

Thank you to our sponsor for partnering with us to make this educational program possible.

FREQUENTLY ASKED QUESTIONS

How do I join the webinar?
After you have registered via the HASDC website, a join webinar link will be emailed to you from HASDC. Please use the “Click Here to Join” link in that email.

What if I get disconnected or can’t login?
We will be actively troubleshooting throughout the web-conference. Text 619-325-9401 if you have any technical difficulties and we will try to help you get back into the web-conference. We encourage everyone to start logging in at 5:20 pm so that we have time to help you troubleshoot and you will still be eligible for the dinner.

How will I receive my dinner gift card?
HASDC will email you an e-gift card from GrubHub to be used to purchase a meal on a later date. Please note: gift cards will be sent to the email you used to register.

Family Education Day

Join us for a day of connection and education. You will have the opportunity to connect with friends old and new, and network with industry representatives via our virtual booth breakout sessions. Our programs and events are open to individuals with a bleeding disorder, carriers, immediate family members/caregivers living in HASDC’s service area.

Update: our Social Paint Party is now full. Join us on Friday night, the day before Family Education Day for our Social Paint Party with Wine & Canvas San Diego. We will be gathering on Zoom to  paint from your home and catch up with one another. Your paint kit will include: a 11×14 canvas, paints, brushes, disposable apron and paper plates.  You can select to participate in your registration. 

DATE | TIME

Friday, April 30, 2021 | Social Paint Party 6:00PM – 8:00PM
Saturday, May 1, 2021 | 10:00AM – 2:00PM

POST-CONFERENCE BOXES

Pre-registered families attending for the entire day (must be logged on by 10:00am) and who participate by having their camera on and/or participating in the chat during discussions will receive a post-conference box filled with product literature and other surprise giveaways including a $50 Target gift card. One box per mailing address.

 Please note: giveaways, boxes and gift cards are only for HASDC members and their immediate family only.  (An HASDC member is defined as someone who is currently on our mailing list and who resides in or receives treatment in San Diego or Imperial County).

VIRTUAL BOOTH SCAVENGER HUNT

Learn more about our exhibitors! Click below to view our Virtual Booth Scavenger Hunt questions. You can click through each sponsor’s virtual booth page, under the Family Education Day tab (to the left), to find the answers. Answer the questions correctly and you will be entered into a drawing for a $100 Amazon gift card. One entry per email. Must be present on 5.1.21 live program to win!

AGENDA

REGISTRATION

At this time, our Social Paint Party the night before Family Education Day is now full but you are still welcome to join us Saturday, May 1!

SPONSORS

Thank you to our sponsors for making this program possible.

Educational Dinner Program

Join us virtually for an evening of education. Our Educational Dinner Programs are open to those with a bleeding disorder and their immediate family members living in HASDC’s service area. 

GIVEAWAY
$50 Grubhub gift card from HASDC to purchase a meal on a later date. See details below on how to qualify. 

DATE | TIME (Fecha | Hora)

Thursday, May 20, 2021 | 6:00PM – 7:00PM

PROGRAM LANGUAGE (Idioma del programa)

Presented in English | Presentado en Inglés

TOPIC (TEMA)

8 Tips to Survive Adulting”
Have you ever wondered if you will survive ‘adulting’? Are you looking for tips to help? Come listen to a presentation that will give you 8 tips to survive adulting.

SPEAKERS (Presentadores)

Marquez Washington, MBA
SR HCL – Southern California, Hawaii

AGENDA (Agenda)

5:50 PM Connect to Zoom link (make sure everything is working)
6:00 PM Welcome & Program Begins
6:45 PM Q&A
7:00 PM Program Concludes

REGISTRATION (Inscripción)

Registration for this program is now closed.

GRUBHUB GIFT CARDS (Tarjetas de regalo de Grubhub)

**Bleeding disorder participants and their immediate family, living in our service area, who register and are logged in for the full 1-hour program are eligible for a Grubhub gift card to purchase a meal on a later date. Additionally, to qualify for our program giveaway, we ask that you be logged on by 6:00 PM and actively participate by having your camera on and/or participating in the chat throughout the program. One gift card provided per family.

Our service area is San Diego and Imperial Counties. If there is availability, those living outside our service area may qualify; distributed in order based on registration date/time. 

SPONSOR (Patrocinador)

Thank you to our sponsor for partnering with us to make this educational program possible.

FREQUENTLY ASKED QUESTIONS

How do I join the webinar?
After you have registered via the HASDC website, you will receive a confirmation email directly from Zoom with the program link. Please use the “Click Here to Join” link in that email.

What if I get disconnected or can’t login?
We will be actively troubleshooting throughout the web-conference. Text 619-325-9401 if you have any technical difficulties and we will try to help you get back into the web-conference. We encourage everyone to start logging in at 5:50PM so that we have time to help you troubleshoot and you will still be eligible for the dinner.

How will I receive my dinner gift card?
HASDC will email you an e-gift card from GrubHub to be used to purchase a meal on a later date. Please note: gift cards will be sent to the email you used to register.

Wellness Wednesdays: It’s About Bloody Time

Join us virtually for our Wellness Wednesdays: Summer Series. Our Wellness Wednesdays series will bring you interactive conversations and movement opportunities as we provide you with wellness resources. Our Wellness Wednesdays: Summer Series is open to individuals with a bleeding disorder and their immediate family members living in HASDC’s service area. 

GIVEAWAY
$25 Target gift card from HASDC. See details below on how to qualify. 

DATE | TIME (Fecha | Hora)

Wednesday, July 7, 2021 | 5:30PM – 6:30PM

PROGRAM LANGUAGE (Idioma del programa)

Presented in English | Presentado en Inglés

TOPIC (TEMA)

“It’s About Bloody Time”
For women with bleeding & clotting disorders. The need for menstrual control is common through reproductive lifestages, but an underrecognized issue in women’s health. We will discuss various menstrual control methods, common misconceptions, and how they pertain to women with bleeding and clotting disorders.

SPEAKER (Presentador)

Dr. Hilda Ding, MD, MS
Pediatric Hematologist/Oncologist, Rady Children’s Hospital HTC

AGENDA (Agenda)

5:20 PM Connect to Zoom link (make sure everything is working)
5:30 PM Welcome & Program Begins
6:15 PM Q&A
6:30 PM Program Concludes

REGISTRATION (Inscripción)

GIVEAWAY

**Bleeding disorder participants and their immediate family, living in our service area, who register and are logged in for the full 1-hour program are eligible for a Target gift card. Additionally, to qualify for our program giveaway, we ask that you be logged on by 5:30PM and actively participate by having your camera on and/or participating in the chat throughout the program. One gift card provided per family.

Our service area is San Diego and Imperial Counties. If there is availability, those living outside our service area may qualify; distributed in order based on registration date/time. 

SPONSOR (Patrocinador)

Thank you to our program sponsor and partner for making this Wellness Wednesday program possible.

FREQUENTLY ASKED QUESTIONS

How do I join the webinar?
After you have registered via the HASDC website, you will receive a confirmation email directly from Zoom with the program link. Please use the “Click Here to Join” link in that email.

What if I get disconnected or can’t login?
We will be actively troubleshooting throughout the web-conference. Text 619-325-9401 if you have any technical difficulties and we will try to help you get back into the web-conference. We encourage everyone to start logging in at 5:20PM so that we have time to help you troubleshoot and you will still be eligible for the dinner.

How will I receive my gift card?
HASDC will email you an e-gift card from GrubHub to be used to purchase a meal on a later date. Please note: gift cards will be sent to the email you used to register.

Wellness Wednesdays: Yoga in the Park

 

Join us virtually for our Wellness Wednesdays: Summer Series. Our Wellness Wednesdays series will bring you interactive conversations and movement opportunities as we provide you with wellness resources. Our Wellness Wednesdays: Summer Series is open to individuals with a bleeding disorder and their immediate family members living in HASDC’s service area. 

GIVEAWAY
Yoga mat will be provided to each attendee. 

DATE | TIME| LOCATION (Fecha | Hora | Lugar)

Please note this event is on a Saturday
Saturday, July 17, 2021 | 9:00AM – 10:00AM | Presidio Park

PROGRAM LANGUAGE (Idioma del programa)

Presented in English | Presentado en Inglés

ACTIVITY (Activo)

Yoga in the Park
Soul Vibes Yoga owner, Nichole, will be guiding us in a restorative yoga class. Restorative Yoga is a nourishing and restful yoga practice to activate our parasympathetic nervous system. This puts our bodies in a state to heal and release those stress hormones that are constantly flooding our bodies to come into a place of balance. It also boosts our immune system, especially in times of great stress.  In Restorative Yoga, there are less poses that are held for longer periods of time to really allow the body to open, release, and feel supported.

Disclaimer: Contact your doctor or physical therapist before starting any physical activity or exercise program for recommendations that are specific to your current level of health. Do not practice yoga if a joint or muscle has had a recent bleed, is swollen, warm, or painful.

SPEAKER (Presentador)

Nichole Wilkinson
Soul Vibes Yoga

Nichole Wilkinson has practiced yoga for over 15-years and is a certified Yoga Teacher, through the Yoga and Ayurveda Center.  She emphasizes awareness and mindfulness in all of her classes. She is a native San Diegan and also works as an adventure guide and outdoor educator. 

AGENDA (Agenda)

8:50 AM Arrive at park and check-in
9:00 AM Yoga Session Begins (no late arrivals)
9:50 AM Debrief
10:00 AM Yoga Session Concludes

REGISTRATION (Inscripción)

GIVEAWAYS

**Bleeding disorder participants and their immediate family, living in our service area, who register and attend the full 1-hour program are eligible for a the yoga mat and towel. Additionally, to qualify for our program giveaway, we ask that you be arrive on time, no later than 9:00AM. One yoga mat and towel per participant.

Our service area is San Diego and Imperial Counties. If there is availability, those living outside our service area may qualify; distributed in order based on registration date/time. 

SPONSOR (Patrocinador)

Thank you to our program sponsor for making this Wellness Wednesdays program possible.

Camp Firefly

HASDC’s Camp Firefly has been serving the youth of San Diego and Imperial Counties for over 20 years. Camp Firefly is a week-long residential summer camp, located in Big Bear, CA, hosted by the Hemophilia Association of San Diego County in partnership with Rady Children’s Hospital Hemophilia & Thrombosis Treatment Center. Camp Firefly serves campers affected with hemophilia, von Willebrand’s disease, platelet disorders, and other rare chronic bleeding disorders from San Diego and Imperial Counties. 

We understand that there is much uncertainty as it relates to COVID-19. We are committed to providing an experience that helps our campers grow, build confidence, and connect with peers. After careful review of the facts, and with advice from our medical team, we will be moving forward with a virtual experience for 2021. We are excited to be partnering with GutMonkey and the National Hemophilia Foundation, Colorado Chapter, to bring you an interactive virtual experience. We appreciate your patience and understanding in these uncertain times.

WHO CAN ATTEND CAMP?

HASDC’s Camp Firefly is for campers, ages 7-14, diagnosed with a bleeding disorder (given priority), carriers and their siblings. Campers must be 7-years old on the first day of camp in order to attend. Siblings must attend with their affected sibling in order to attend. Campers must independently manage all personal care and mobility. Those living within San Diego & Imperial Counties will be given priority.

WHY ATTEND CAMP?

Camp Firefly provides youth with the tools they need to overcome the challenges presented to them by their disorder as well as lead healthy, vibrant and more importantly, full lives. By attending Camp Firefly, campers will gain independence, connect with peers, experience bleeding disorder education and attend self-infusion training provided by our local HTTC staff. Learning to self-infuse is an important rite of passage for children living with a bleeding disorder as most often their parents have performed this task since they were infants. Learning self-infusion is a critical step towards gaining independence.

Professional medical staff from Rady Children’s Hospital Hemophilia & Thrombosis Treatment Center are on site for duration of the camp program.

CAMP COST

Each camper is to pay a non-refundable $25.00 registration fee. Additional camp costs are underwritten by grants and funds raised by HASDC’s Unite for Bleeding Disorders Walk.

Due to the pandemic, this year’s registration fee will be waived for our virtual camp program.

DATES | TIMES

Monday, July 19, 2021 | On Your Own
Tuesday, July 20, 2021 | 9:00AM – 10:30AM
Wednesday, July 21, 2021 | 9:00AM – 10:30AM
Thursday, July 22, 2021 | 9:00AM – 10:30AM

CAMPER BOX

Each participant will be mailed a Camp Box that will contain all materials necessary to complete camp activities. In addition to program materials, Camp Boxes will also include a camp t-shirt and other fun surprises.

REGISTRATION

Join us for our galaxy themed camp! Help us save camp from the weepuls! Campers can expect hands-on activities such as building robots, doing galaxy inspired tie dye, and making (and eating!) space snacks. All camp activities will be a mix of tradition, such as a campfire, and novel… are you ready for an intergalactic SPACE JAM? Campers should also start thinking about their talents for another all camp talent/variety show this year. 

Registration for Camp Firefly is now closed.

ZOOM

How do I join the webinar?
Zoom webinar information coming soon.

What if I get disconnected or can’t login?
We will be actively troubleshooting throughout the camp program. Text 619-325-9401 if you have any technical difficulties and we will try to help you get back into the program.