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Venue: The Westin Buckhead Atlanta, 3391 Peachtree Rd. NE, Atlanta, GA 30326

June 15, 2016 |by scconvention | 0 Comments | blog, Meetup

The venue is set. The 4th Annual Sickle Cell Patient & Family Educational Symposium will be at The Westin Buckhead Atlanta, 3391 Peachtree Rd. NE, Atlanta, GA 30326.  We’ve made sure it’s close to the Metro so locals can easily navigate to.

Newly refreshed and situated in the heart of the upscale Buckhead community, this Buckhead hotel is surrounded by the finest shopping and dining experiences in Atlanta. We recently completed a renovation of our guest rooms and public spaces, as well as the renowned Atlanta restaurant, The Palm. We are next door to Lenox Square and the Shops Around Lenox and across the street from Phipps Plaza. Our 30,000 square feet of flexible meeting and event space provides the perfect backdrop for your Atlanta meetings and weddings.

Check out more photos and book your rooms HERE.

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2016 Patient & Family Educational Symposium

June 13, 2016 |by scconvention | 1 Comments | blog, Meetup

Sickle Cell Warriors, Inc. joins the Sickle Cell Community Consortium for the Annual Patient, Family & Community Educational Symposium. The Theme for this year is Spirit Indestructible. 

Go to WAR with sickle cell disease at the annual Patient & Family Educational Symposium in Los Angeles, CA, July 28-31, 2016!

Now in its third year, the event serves as an annual retreat and educational symposium. It was created to allow members of the sickle cell community to unite to educate, encourage and empower one another, with a chance to rest and re-energize for the ongoing battle.

The inaugural event in 2013 set the tone with a cruise to Nassau, Bahamas, a tradition that will continue on odd years in the future. In 2014, we had a memorable takeover of Atlanta, GA. This year’s convention will be Los Angeles, CA.

Guests will have access to a variety of activities, including a formal dinner, a talent show, scavenger hunt, multiple educational symposiums, peer roundtables, informational booths and more.

The Convention is open to anyone whose life has been touched by sickle cell in some way. Family, friends, caregivers, healthcare workers and warriors with any variation of the sickle syndromes are welcome. The focus of this event is the entire sickle cell community. At WAR, patients and families come first!

There are more than 100,000 people in the United States living with sickle cell disease, with hundreds of thousands more dedicated to standing on the front lines with those are affected. Come stand united with your fellow warriors in the WAR on sickle cell this summer. Registration is now open. Spots are limited, so reserve your space today!

Be educated. Be supported. Be inspired. Be empowered.

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Registration is now Open

June 4, 2016 |by scconvention | 1 Comments | blog, business, Meetup, Uncategorized |
This cop didn't know what he signed up for!

The Gathering last year, a cruise to the Bahamas

Hey Warrior Family!

We hope you are doing well.

Sickle Cell Warriors, Inc. is planning the Third Annual Sickle Cell Community Gathering and Educational Symposium. This year it is in Los Angeles, CA on July Twenty-eight to Thirty-one at the Loews Hollywood Hotel in Hollywood, CA. We are delighted to invite you to attend and participate in the Gathering.

The Gathering is an annual event designed to bring the sickle cell community together. It’s focused on celebrating warriors, parents, family members, friends, and caregivers, those who fight on the front lines daily the battle against sickle cell disease. The mission of the Gathering is to encourage participants to live vibrantly with sickle cell, achieve all their dreams and potential while managing their health. All are invited who are directly impacted in some way by sickle cell disease. All ages are welcome.

Dealing with sickle cell is something we often do alone, with very little help. But the Gathering gives us all an opportunity to share our collective experiences, learn together, share together, and form lasting bonds and friendship. Those who attended the Gathering last year found it enjoyable, educational, and gratifying. One great theme was the fact that we are not victims in isolation, living in silence and sadness. The Gathering brings us all together to share our experiences with others who have also walked in the same shoes.

Yes, we are fly, and yes, we know it!

Yes, we are fly, and yes, we know it!

We have built into the program free time for those who wish to explore Hollywood and devised a Scavenger Hunt to help you in this quest.

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It won’t be just fun and games. This year’s program promises to be an enriching, educational experience. The topics for the Gathering have been carefully selected by topics requested by the members of the sickle cell community. All facilitators and participants are warriors, just like you. On Thursday evening, we have a can’t-miss session that teaches everyone about the science of sickle cell to help understand what is really going on in our bodies.

The half-day symposiums on Friday and Saturday address coping strategies for every aspect of your life, including dealing with work, school, family, and relationships. We have two simultaneous sessions, so whether you are a warrior, parent or caregiver, there is bound to be a session you learn from. We have a session that details how to manage with hospitalizations, from both sides of the coin. We will have sessions that address the emotional impact of sickle cell, discuss alternative remedies, and even debate current treatment options. We even have After Dark sessions that discuss taboo topics.

On Saturday night we will have a celebration/dance party for all participants, and an awards banquet that celebrates the nominees of the Sickle Cell Warriors’ Community Service Awards; self-sacrificing people who support us in the fight against sickle cell disease. Please bring a costume or formal attire. We will also introduce the 2014 Sickle Cell Warrior Prince & Princess, youth who exemplify living well with sickle cell. On Sunday morning we will have an advocacy training course to jumpstart those interested in community activism. These are just some of the many programs we have planned for the long weekend.

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Registration for the Gathering is $125.00 per adult, regardless of participation. However, if you are part of a Consortium member organization, you will get a discount code that gives you 50% off enrollment. Children under 12 are $75.00 if accompanied by a registered adult. Young adults 13-21 are $100. Registration allows us to provide a daily breakfast buffet, lunch on Friday, and the ticket price for the Saturday full-plated dinner banquet.  Hotel, travel, and incidental costs are at your own expense. If you cannot make it for the entire weekend and would like to attend only part of the program, please contact us for an amended rate.

We do have vendor tables and displays available on all days. Contact us directly for the rates. To learn more about the Gathering, please visit http://sicklecellconvention.com or email Events@sicklecellwarriors.com.

If finances are a concern, feel free to share this invitation with your friends, family, and networks, and express to them your personal need to attend the Gathering for your own enrichment, support, education, and encouragement. Many members have started successful crowdsourcing campaigns and raised necessary funds. Budget how much it would cost (hotel, travel, registration, incidentals), tally up the total, then create a page on Go Fund Me like this: http://www.gofundme.com/7frleg. Share the link via email and social media among your friends, colleagues and family. Several people pitching in five or ten dollars will help you reach your goal. Sometimes, all you have to do is ask.

If you cannot attend, consider sponsoring someone via a donation toward registration for another warrior or family. Or make a donation directly to Sickle Cell Warriors, Inc. by visiting http://sicklecellwarriors.com/donate/

Please feel free to share the attached flyer with your community and networks. This program was designed by the sickle cell community for the sickle cell community, and is directly focused on supporting warriors (patients), and their families in the fight against sickle cell disease.

Thank you and we look forward to seeing you at this year’s Gathering!

Tosin Ola & Lakiea Bailey

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Dance Party all Saturday Night

May 22, 2016 |by scconvention | 0 Comments | blog, Meetup

It is a long established fact that a reader will be distracted by the readable content of a page when looking at its layout. Contrary to popular belief, Lorem Ipsum is not simply random text.

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Testimonials

May 22, 2016 |by scconvention | 0 Comments | blog, Meetup

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Atlanta’s Tentative Agenda

October 19, 2015 |by scconvention | 0 Comments | blog |

Here is a look at the previous agenda from our Atlanta program. Don’t worry, we have a full roster of other great programs for you.

 


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

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