« Back to All Events

Virtual Dinner Program – Gene Therapy Research:

Join us virtually for an evening of education. Our Virtual 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) who register by May 6 and are logged in for the full 1.5-hour program will receive a Gift Card* to purchase dinner on a later date. *One per family. 

GENE THERAPY RESEARCH: UNDERSTANDING THE SCIENCE
In partnership with BioMarin and Dr. Tammuella Singleton. Gene therapy has been explored as a potential treatment approach for well over 50 years.  This talk will provide a general overview of the following questions: What causes genetic conditions? What are the different types of gene therapies being researched? What are gene therapy trials trying to figure out?

PROGRAM SPEAKERS
Robert Friedman
Sr. Account Manager – Hemophilia, BioMarin

Tammuella Singleton, MD
Director, Hemophilia Treatment Center Mississippi Center for Advanced Medicine, Slidale, LA

Dr Tammuella Chrisentery-Singleton is the Director of the Hemophilia Treatment Center at the Mississippi Center for Advanced Medicine. She graduated with honors from Xavier University, received her MD from Louisiana State University and then completed her pediatric residency at the University of Miami. Following residency, she completed pediatric hematology/oncology fellowship training at Johns Hopkins University, where she worked with Dr. Jim Cassella and developed a serious interest in disorders of coagulation, particularly hemophilia. After her fellowship training, she was recruited to join the pediatric hematology/oncology faculty at LSU and Children’s Hospital of New Orleans. In 2010, Chrisentery-Singleton accepted a position at Tulane University because of her desire to receive more training and spend more time in the specialized coagulation medicine program.

This program will be presented in English. 

Click Here for Program Flyer


DATE
Thursday, May 7, 2020

TIME
5:30 PM – 7:00 PM

AGENDA
5:20 PM Connect to Zoom link (make sure everything is working)
5:30 PM Welcome & Program Begins
6:30 PM Q&A
7:00 PM Program Concludes

LOCATION
From your home! Virtually attend from any smart phone, tablet, laptop or computer.

TECHNOLOGY
All of our virtual (online) programs are offered through Zoom. It is a free service with a downloadable app for your smart phone, tablet or you can go online. Some sessions will have video chat options – which we encourage because seeing familiar faces can help reduce isolation and increase your mental health. For sessions without video chat options, please use the chat feature to type in your questions.

REGISTRATION
Registration for this program is now closed.

IN PARTNERSHIP WITH

FAQ
How do I join the webinar?
After you registered via the HASDC website, a join webinar link will be emailed to you from “HASDC” the day before the event. Please use the “Join Zoom Meeting” link in that email.

How do I access video from my smart phone or tablet?
Download the free Zoom App available for apple, google and android.

Is this a video conference? Can people see me?
Yes, your video camera will be turned on upon entry into the webinar. If you do not wish to show your face, you can turn your camera off. No one will be able to see or hear you during tonight’s program. All participants will be placed on mute.

How do I submit questions during the program?
Please use Zoom’s chat feature to submit questions during the program. We will make sure to answer them during the Q&A. We ask that you only use this feature to submit questions and limit conversation.

I don’t have a strong enough internet connection at home or a device: There is a call-in option for the conference. Please let us know ahead of time if this is an issue for you and we will send you the presentation images and the call-in number.

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.

Who is eligible for a gift card?
Bleeding disorder participants and their immediate family (living in our service area*) who register by May 6 and are logged in for the full 1.5-hour program are eligible for a Grub Hub gift card* to purchase dinner 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. 

How will I receive my dinner gift card?
If pre-registered and you are logged in and actively participating during the full 1.5-hour for the web-conference (5:30 PM – 7:00 PM), you will be emailed a e-gift card from Grub Hub to be used to purchase dinner on a later date (please note: gift cards will be sent to the email you used to register).

If I get disconnected will I still be eligible for the dinner gift card?
To be eligible for the dinner gift card after a disconnection, you need to try to log back in and attempt to join by phone only. If you’ve exhausted all options, cannot log back in, and have completed 75% or less of the web-conference, you will be placed on a waiting list for the gift cards if supplies are available.