Events

Kids Conquering SCD is Active in Community Planning & Participating in Events

Events List

Kids Conquering Sickle Cell Disease presents educational lectures within the community offering presentations locally & nationally. We welcome the opportunity to participate in health fairs and events to educate the community.  We cover topics such as sickle cell & sickle cell trait, eliminating health disparities through patient & family advocacy,  Young Adults Transitioning from Pediatric to Adult Care: Bridge the gap through knowledge & resources, Keys to Sickle Cell Education and Supporting Families, Our Voice Our Power: Understanding Clinical Research and Patient Powered Outcome, and more!

Presenters are trained facilitators.

Contact Us to be apart of your event! We welcome the opportunity to educate and empower patients, families, our health community, students, and stakeholders with interest in sickle cell.  Contact us at clewis@kidsconqueringscd.org

Community Presentations & Health Fairs

Date: Feb. 24th – 28, 2020

Time: 10 – 3pm

Place: Washington DC Capital Hill

Make your voice be heard at Rare Disease Week on Capital Hill!

Join Kids Conquering Sickle Cell Disease Foundation in Washington, DC for Rare Disease Week on Capital Hill. We are joining the Every Life Foundation uniting with compassionate advocates embraced for a change.

Each year we look forward to advocating on Capital Hill during Rare Disease week on Capital Hill to:

  • Network with advocates around the country to build partnerships and unite to strengthen our community of advocacy.
  • Make a difference on Capital Hill to build relationships with members of Congress and staff meeting face to face with lawmakers and staff who shape our national healthcare policies.
  • Become more informed on legislation currently under consideration by Congress, enhance effective advocacy techniques & better understand critical issues that affect your continued access to quality care.

Activities Scheduled:

Monday, February 24th: 9:00 am—5:00 pm: Rare Disease Day Public Meeting at FDA*  Food and Drug Administration 10903 New Hampshire Ave, Building 31, The Great Room Conference Center, Silver Spring, MD 20993

Tuesday, February 25th: 1:00-2:00 pm: Rare Disease Congressional Caucus briefing and Group Photo Capitol Hill, Russell Senate Office Building, Room 325, Washington, DC Metro Stop: Capitol South (House side) or Union Station (Senate side)

Tuesday, February 25th: 5:30pm – 9:30pm: Cocktail Reception and Rare Disease Documentary Screening Ronald Reagan Building and International Trade Center  Amphitheater, 1300 Pennsylvania Ave NW, Washington, DC 20004  Metro Stop: Federal Triangle

Wednesday, February 26th, 8:00am – 4:45pm: Legislative Conference  Ronald Reagan Building and International Trade Center  Atrium Ballroom, 1300 Pennsylvania Ave NW, Washington, DC 20004  Metro Stop: Federal Triangle

Wednesday, February 26th, 6:00pm: Young Adult Meetup  Rare Hub  1012 14th Street NW, Suite 500, Washington, DC 20005  Metro Stop: McPherson Square

Thursday, February 27th, 7:00am – 8:30am: Lobby Day Breakfast  Ronald Reagan Building and International Trade Center  Atrium Ballroom, 1300 Pennsylvania Ave NW, Washington, DC 20004  Metro Stop: Federal Triangle

Thursday, February 27th, 9:00am – 5:00pm: Scheduled Meetings with Members of the House and Senate  10:00am – 5:00pm: Hospitality Room TBD U.S. Capitol  Metro Stop: Union Station (Senate side) or Capitol South (House side)

Thursday, February 27th, 5:00pm – 7:00pm: Rare Artist Reception  Capitol Hill, Hart Senate Office Building, Room 902, Washington, DC (Use “North” elevators) Metro Stop: Union Station (Senate side) or Capitol South (House side)

Friday, February 28th, 8:30am – 4:00pm: Rare Disease Day at the National Institutes of Health*  National Institutes of Health  9000 Rockville Pike, Building 45, Main Auditorium, Natcher Conference Center, Bethesda, MD 20892  Metro Stop: Medical Center Station

All events require advance registration. For more information or to register, please visit http://rareadvocates.org/rdw/.
*Hosted by an outside organization and listed for informational purposes.

Rare Disease Week on Capital Hill

Date: March. 7th, 2020

Time: 11 – 3pm

Place: Sweet Tomatoes – 12561 S Apopka Vineland, Orlando, FL 32836

Featured Guest: Simone Uwan, MD & Author

Free to all Registered Guest. Please register at: https://www.eventbrite.com/e/brunch-conversations-tickets-93847832393

Join us March 7th for a time of networking and great conversations to enhance your health and knowledge!

It can be a challenge to navigate care in the emergency room, upon being admitted to the hospital and beyond. An emergency room experience can present a good, new or challenging situation. Luckily, empowerment and educating ourselves how to navigate care is something we can learn, practice, and embrace!

We are pleased that there are new medications available to fight complications of blood disorders including sickle cell disease. We are looking forward to discussing resources to access treatments and therapies.

Our Brunch & Conversations will include a discussion on understanding the best practice care guidelines in place that help enhance quality care, confidence, and establishing supportive health partnerships. The care that is delivered in the emergency department is often cited by patients with sickle cell disease as the area of health care in greatest need of improvement.

Together we can enhance quality of care by enhancing our knowledge, act through empowerment and taking steps to improve our health!

Kids Conquering Sickle Cell is excited to offer several series of Brunch & Conversations for 2020 providing an educational networking experience for individuals and caregivers impacted by sickle cell and hemoglobin disorders.

This event require advance registration. For more information or to register, please visit https://www.eventbrite.com/e/brunch-conversations-tickets-93847832393

Brunch & Conversations

Urgent Update: Due to The COVID 19 Pandemic this Session is Cancelled. We Hope See You at Camp Boggy Creek for our 2021 Session.

Family Camp Weekend: April 3-5 2020

Lecture Date: April 4, 2019 3pm

Place: Camp Boggy Creek – Registration Required at Camp Boggy Creek Webite: http://www.boggycreek.org/campers/camper-application/

Presenter: Carla Lewis

Come join a time of education and empowerment during our parent & guardian lecture session with CEO Carla Lewis. Camp Boggy Creek Family Weekend is a great experience for all! During the Lecture Session parents are free to share their experience, gain knew information and resources. This is a time of empowerment while parents will also gain knowledge while enjoying a weekend of family fun.

Camp Boggy Creek Family Weekend

 

Date And Time

Date: Saturday, August 8, Sept. 12, Oct. 10, Nov. 14, Dec. 12 (The 2rd Saturday of the month)

Time: 11am – 1:00 pm

Place: Zoom

Cost: Free

Audience: Warriors 16-21 and their caregivers

Registration: https://www.eventbrite.com/e/empowered-to-transition-emerging-adults-sickle-cell-education-series-tickets-112859586060

Empowered to Transition: Emerging Adults Sickle Cell Education & Support Program

Kids Conquering Sickle Cell Disease Foundation is excited to offer a new virtual transition education program with support sessions for adolescents, their parents, and young adults starting in August to December 2020. Our goal is to increase the number of emerging adults who successfully transition into adult care and provide support to prepare for adult life with a chronic condition.

The interactive session topics will include, but not be limited to, balancing life with sickle cell or related blood disease, healthy habits, warning signs of complications, post high school planning (college/workforce, nutrition, social life), mental health, managing pain, sexual health, organizing health care information, planning for emergencies away from home, etc.

The sessions will be segmented by age (16-18; 19-21) and simultaneous parent sessions (of 16-19 yrs. old) will be conducted. There will be 5 sessions August – December. Sessions are once a month on the second Saturday of every month.

We understand that teens and young adults need education, resources, and support as they transition from pediatric care to adult care. Our interactive sessions are tailored to provide education and fun while we journey through five monthly sessions. Topics will be tailored developmentally. The sessions will be facilitated by individuals with topical expertise and some sessions will be co-facilitated by presenters with lived experiences. We will include fun activities that include prizes for our participants. We will also be providing our Conquerors Tool Kit to participants that successfully complete our program.

Emerging Adult Transition Program

Date: Tuesday, August 4th, 2020

Time: 10 am

Place: National Medical Association

Topic: The Impact of Sickle Cell  Disease. The lecture session will include the caregiver & patient perspective with Carla Lewis, Dr. Campbell, Dr. Zaidi & Teonna Woolford.

Carla Lewis, CEO of Kids Conquering Sickle Cell is excited to be a part of a discussion panel sponsored by Novartis.

The American Medical Society Conference

 

Lecture : Thursday, August  25 1 pm

Place: One Rare Experience Virtual Camp

Presenter: Carla Lewis & Semira

Topic: The Power of Advocacy: Navigating Healthcare as a Young Adult

Registration: OneRare.org

Cost: Free

Come join a time of education and empowerment during our lecture session with CEO Carla Lewis & Semira Javorski at The One Rare Experience.

One Rare Experience

Date: Thursday, Sept. 24th, 2020

Session Time: 7:30 am- 8:30

Place: Foundation for Sickle Cell Disease Research Virtual Convention

Registration : https://www.fscdr.org/

Fee: Yes – Varies

Topic: The Impact of Sickle Cell  Disease. The lecture session will include the caregiver & patient perspective with Carla Lewis, Dr. Campbell, Dr. Zaidi & Teonna Woolford.

Carla Lewis, CEO of Kids Conquering Sickle Cell is excited to be a part of a discussion panel sponsored by Novartis.

2020 Foundation For Sickle Cell Disease Research Convention

Date: Saturday, August 15, Sept. 19, Oct. 17, Nov. 21, Dec. 19  (The 3rd Saturday of the month)

Time: 10am – 11:30 AM

Place: Zoom

Cost: Free

Register: https://www.eventbrite.com/e/sickle-cell-awareness-month-celebration-finding-purpose-in-the-pandemic-tickets-118166817131?aff=ebdssbonlinesearch

Host: Selena Webster-Bass MPH, Carla Lewis & Clayton “DJ” Martin

Voices Institute in collaboration with Kids Conquering Sickle Cell Disease Foundation & the Benjamin  Ivory Foundation invites you to join us for morning discussions of empowerment! We understand this is a time that individuals and families need support & resources. Join us for a circle of support while gaining knowledge & resources.

We will have guest speakers and prizes! We welcome you to join us!

Sickle Cell Support Circle

Date: Saturday, Sept. 11, Oct. 9, Nov. 13, Dec. 11  (The 2rd Friday of the month)

Time: 7 pm – 8:00 pm

Place: Facebook & Instagram Live @ Kids Conquering Sickle Cell Disease

Cost: Free

Register: https://www.eventbrite.com/e/fun-friday-conversations-tickets-119036721037?aff=ebdssbonlinesearch

Host: Carla Lewis, Cory Davis, Dominique Goodson, Semira Javorski & Terri Booker, Esq.

Join host Young Adult Sickle Cell Alliance at our Live – Fun Friday Conversations. We are providing a time for young adults to network while enjoying some laughs!

This will be a time to grab your cool aid or some wine to celebrate a time away to network and just enjoy laughs!

We are inviting our community fighting a chronic disease to join us as we have fun conversations about relationships, favorite places to travel, adventures, experiences and more!

COVID 19 has brought some sad times to many people and we are offering a support opportunity of networking, fellowship & enjoyment!

We are facing not only a health pandemic, but a social pandemic on various fronts. These include the health pandemic, racial injustices, and of course the effects of all of these issues impacts one’s mental health. We are offering this fun experience to help our community embrace a time to enjoy a social time & networking while also balancing the importance of managing all of these matters.

All registered participants on Eventbrite.com will be entered in a drawing to receive our $25 gift card to Cheesecake Cake Factory. Three Winners will be selected each month! We will announce winners live! They must be present to accept our prize.

We will have guest speakers and prizes! We welcome you to join us!

Fun Friday Conversations

Date: Sept. 17- 19th

Adolescent Session @ Cayenne Wellness 12th Annual Educational  Seminar – 2020

Session time: Friday, Sept. 18  at 1:00 pm

Place: Virtual- Whova App

Moderator: Cierra Jackson 

Panel Speakers:

Shamar Lewis, Jazz Hunter, Alana Brodie, Kelly Russell, &  Renee Webb

Session Title: Teens & Adolescents Living with Sickle Cell 

Join Kids Conquering Sickle Disease Foundation Advocate, Shamar Lewis & fellow warriors share their experience living with sickle cell.

Join us at Cayenne Wellness  2020 Seminar!

Registration is required. Please visit www.sicklecelldisease.org

Cayenne Wellness Seminar - Teen & Adolescent Session

Date: Oct 13- 17th

Kids Conquering Sickle Cell Young Adult SC Alliance Session @ National Sickle Cell Disease Association of America (SCDAA) 2020 Convention

Session time: Thursday Oct 15  at 2:15 pm

Place: Virtual- Whova App

Moderator: Carla Lewis

Panel Speakers:

Chanell – Semira Jarvorsky

Tynisha Hall

Dayshana Jones

James Griffin III

Young Adult Care: If You Really Knew How I Feel. Promoting Health Improvement of ER Care

This panel discussion will emphasize warrior experience to fight sickle cell while trying to navigate the health system, make health decisions and their call to effect system changes in emergency room care. Warriors will share what is most important to them during this time of the Adulthood & COVID 19 Pandemic. They will also discuss community resources that have assisted with health maintenance and a helpful current plan of care. They will openly express their feelings of the reality of healthcare experiences addressing their pain in ER. Young Adult Patients will discuss access to medical treatment and helpful tips of managing their health during this time of a pandemic.

Join us at the National Sickle Cell Disease Association of America’s 2020 Convention! We are excited to be apart of the SCDAA annual convention! Join Us for an interactive informative session with resources & prizes!

Registration is required. Please visit www.sicklecelldisease.org

SCDAA Convention - Young Adult Sickle Cell Alliance Session

Date: Saturday, November 21, 2020

Time: 11:00 am-4 pm

Cost: Free

Place: Abracadabra Ice Cream Factory

520 N Main Street Kissimmee, FL 34744

Kids Conquering Sickle Cell Disease Foundation is excited to host our Gift of Hope Toy & Blood Drive. Children fighting blood diseases such as sickle cell depend on blood transfusions for treatments to save their life. Your contribution of donating blood gives children help and hope! Your support assist us to help our community impacted by sickle cell & other disorders.

Kids Conquering Sickle Cell Disease is seeking sponsors to adopt low income families with a child with sickle cell disease or related illness experiencing health challenges. We aim to support families during the holiday season. We understand the health and financial burden a family can experience caring for a child with a chronic life threatening condition associated with frequent hospital admissions and medical care. We welcome you to contact us and offer a gift of hope for the holiday season.

Contact admin@kidsconqueringscd.org

******Please Bring A Gift Card to Support Our Gift of Hope Toy & Blood Drive to Support Children Fighting Sickle Cell & Chronic Blood Diseases. Due to the COVID 19 Pandemic we are NOT accepting new toys. We are accepting gift cards and cash donations to assist families.

For Questions Contact: clewis@kidsconqueringscd.org or call 407 844-2474

A Gift of Hope Toy & Blood Drive