Program for the SCW Gathering & Educational Symposium July 17-20
2014 Sickle Cell Community Gathering & Education Symposium
PROGRAM AGENDA
Please note that this schedule is a guideline, but times/rooms/and sessions are not set in stone.
Announcements will be made if there are any changes.
Always bring your journal or notebook with you.
THURSDAY, JULY 17TH
8:00PM – 9:00PM WELCOME
Taming the Hospital Frontier……………………………………………. PIEDMONT A
Role-play with us as we explore the various issues that occur during an ER visit, or hospitalization for sickle cell crisis. How can we improve the care we receive? How can we become better guardians of our health? What strategies should we enforce or avoid? Learn about protecting your rights and your health in the hospital.
10:00PM – 12:00AM Insomniacs Café…………………………………………………………………….. PIEDMONT A
Come to the hotel lounge and join us as we talk about anything and everything on their minds. Consider it a slumber party for those who are still awake and looking for something to do. Get to know your team better as you prep for the Scavenger Hunt and challenges this weekend. Games on deck: Taboo, Spades, Clue, Cranium, Mafia, etc. This promises to be a fun event!
FRIDAY, JULY 18TH
8:00am – 9:00AM yoga in the morning……………………………………………………………… LENOX
Wake up and rejuvenate with April Green, certified Yoga instructor. Learn the basics of yoga, using yoga for pain management, and effective poses and techniques for those with sickle cell.
10:00AM -11:00AM SYMPOSIUM OPENING CEREMONY…………………………………………. …. Peachtree A
10:15AM -11:00 AM The Science of Sickle Cell………………………………………………….. PEACHTREE A
Part of the Sickle Cell Warriors, Inc. Expert Patient Series, this session dives into the science of sickle cell. Learn the details that are often glossed over in biology class, including basic genetics, inheritance, and why sickle cell affects so many people of color.
11:00AM – 11:30 AM Concurrent Sessions
TOPIC A: sickle cell MYTHS & Cures……………………………………. PEACHTREE A
Nutrition, debunking “miracle cures”. Listening to your intuition. How to do basic research. Questions to ask to develop your own BSPP (BS prevention protocol).
TOPIC B: Transition: Growing Up & LearNING to LET GO ……………
Youth: Learn how to successfully transition from being taken care of by your parents to becoming a Guardian of your own health.For Parents: The Art of Letting Go, Learn how to gradually release the reins and allow your children to transition into adults with sickle cell disease. You will always be their parent, but they need to learn to take care of themselves
11:35AM – 12:00PM CONCURRENT SESSIONS
TRACK A: HAVE BAGS WILL TRAVEL (ADULT)…………………………… PEACHTREE A
Travel, Sports and Hobbies: How do you travel with sickle cell and prevent a crisis? Get those stamps on your passport, and enjoy your vacation. How can you maintain your health while traveling all over the country? Can you travel with sickle cell? It is possible, with a few strategies to protect yourself—and your vacation.
TRACK B: navigation through GRADE & HIGH school……………………………………………………………………….. LENOX
How to help your children navigate school and their careers. This session explores everything on the 503B, truancy laws and how to educate the teacher on sickle cell.
12:05PM – 12:30PM CONCURRENT SESSIONS
TRACK A: Navigating EDUCATION AND CAREER……………………………………………………………………………………… PEACHTREE A
Schooling: Yes, it is possible to go to college and graduate. Learn how to make it through the challenges and finish strong with a degree from professionals who have sickle cell disease too!
TRACK B: SPORTS & HOBBIES (YOUTH)………………………………………….. LENOX
How to run, swim, play, and win over sickle cell. Protecting your children as they mature into well rounded adults with sickle cell
12:35PM – 1:30PM CONCURRENT SESSIONS
Track A: Couples Roundtable…………………………………………… PEACHTREE A
How can you date with sickle cell? To tell or not to tell? When do you tell him/her? How do you find the One? Balancing your health and your social life. Find out from warriors just like you. It’s time to talk about relationships, love, money matters, emotions, fights, family, and everything in between. Listen to other couples as they share their experiences and what they’ve learned through 5, 10, and 20+ years together. Talking to your partner about your health needs.
Track B: Parent-to-Parent Roundtable………………………………… …………………………………………………………………………………………….. LENOX
Beating the Guilt Monster: Dealing with the emotional guilt or depression of having a child with sickle cell. Coping emotionally when your child is in pain. Taking care of yourself, so you can take care of your warrior. Family Time: Everyone is important, not just the warrior, making the other kids feel special too. Creating family memories. Learn from other parents how to manage work, school, relationships, insurance, FMLA, and give all you have to your children. Plus get tips on raising great kids, discovering your inner tiger/tigress, taking time out for yourself, and settling into becoming an advocate.
1:30PM – 2:30PM Lunch………………………………………………………………………………….. PEACHTREE B HOSTED BY: BE THE MATCH & bluebird bio
1:00PM – 7:00PM Vendor Tables Open
6:00PM – 8:00PM ATLANTIC STATION SCAVENGER HUNT/FREE TIME…………………………. …………………………………………………………………………………………….. LOBBY
Join us in the lobby to ride the hotel shuttle to the MARTA station (first run: 5:15pm)
Here is some free time to relax or enjoy Atlanta. Meet us in the hotel lobby and bring your MARTA passes and Warrior discount cards because we’re headed to the fabulous Atlantic Station for our Warrior Group Outing. Located in Midtown Atlanta, Atlantic Station offers extraordinary shopping, dining and entertainment! Come prepared to compete against the other teams during the Warrior Scavenger Hunt. Can you figure out all of the clues and find the mystery items?
10:00PM-12:00PM WARRIORS AFTER DARK……………………………………………………………….. LENOX
This session covers the fun, crazy, and shared experiences of living with sickle cell. We will also cover After Dark topics like priapism, marijuana, alcohol, sex and everything in between. Must be 18 years or older to attend this After Dark Session. If you want to be on the panel, please contact us.
SATURDAY, JULY 19TH
7:00AM – 10:00AM Hot Breakfast buffet (Hotel Guests Only) THE GREENLEAF
8:00AM – 10:00AM Registration Open………………………………………………………………. BANQUET FOYER
8:00am – 9:00am yoga in the morning………………………………………………………… lenox
Wake up and rejuvenate with April Green, certified Yoga instructor.
10:00AM – 10:45AM Professionals Roundtable………………………………………………… Peachtree a
At this roundtable, discover that it is possible to have a career with sickle cell disease. You can go to school, work, get a job, and follow your passions. Learn from warriors who are living and pursuing their professional dreams.
10:50AM – 11:25AM KNOW YOUR EMPLOYEE RIGHTS…………. PEACHTREE A
Understand the laws that are available to you in order to take care of yourself and remain employed. Understand how to file for FMLA, ADA, ADAAA, PDA and other laws. Review paperwork and discuss your Healthcare provider’s responsibility. Understand the laws that are in place to protect you while in college. Participate in a roundtable to discuss what laws impact you specifically.
11:30AM – 12:00PM CONCURRENT SESSIONS
TRACK A: The Do’s and don’t’s of Scd (Adult)…. …………………………………………………………………………………………….. PEACHTREE A Understanding your body and its warning signs. The complexities and complications of sickle cell. Come prepared to hear from Warriors and an adult expert hematologist on how to manage the complications and still pursue your dreams. Get your questions ready. Do you know what your triggers are?
TRACK B: BECOMING A WARRIOR…………………………………………… …. LENOX
Learn how to successfully transition from being taken care of by your parents to becoming a Guardian of your own health. Bring your notebook with you.
12:00AM – 1:00PM CONCURRENT SESSIONS
TRACK A: Alternative Management and Therapies……………. PEACHTREE A
New strategies for managing daily pain (including Yoga, Acupuncture, Stress Management). Non-medical ways of managing your sickle cell pain that improve your health, wellness, and mood.
TRACK B: FOR MEN ONLY……………………………………………………………. LENOX
A private, for men only discussion about the topics of concern to Warrior men.
12:00PM – 5:00PM Vendor Tables Open………………………………………………………………… FOYER
1:00PM – 2:00PM Clinical/Pharmaceutical Research PanEL LUNCH…………… Piedmont A
Everything that you need to know about clinical and pharmaceutical research. Why it’s important, how you can get involved. Basics of clinical and drug research and Q&A with those directly involved in research directly involving sickle cell patients.
6:00PM – 11:00PM Warrior Banquet……………………………………………………………….. PEACHTREE A & BDinner, Dance and Award Ceremony. See pages 25-27 for more details and for a specialized program of events.
*Please turn to the next page to see Sunday’s schedule*
SUNDAY, JULY 20TH
7:00AM – 10:00AM Hot Breakfast buffet (for hotel guests) ……THE GREANLEAF
8:00am – 9:00am yoga in the morning ……………………………………………………………………………………………. lenox
Wake up and rejuvenate with April Green, certified Yoga instructor.
10:00AM – 10:45AM BECOMING AN EFFECTIVE ADVOCATE …… PIEDMONT A
10:45AM – 11:00AM CLOSING REMARKS………………………………………………………………… PIEDMONT A
11:00AM-11:30AM OPEN BUSINESS MEETING……………………………………………………….. PIEDMONT A
You are invited to join us as we discuss plans for the 2016 Sickle Cell Community Gathering and Education Symposium. Vote for your favorite location and make nominations for planning committee co-chairs. We will also discuss future Sickle Cell Warriors, Inc. community projects and how you can get involved.
11:30AM-2:00PM CLOSED BUSINESS MEETINGS……………………………………………………….. TBD
