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

Time: 10am – 11:30 AM

Place: Facebook Live

Cost: Free

Register: @ www.eventbrite.com

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: Tuesday, August 4th, 2020

Time: TBA

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

Date: Oct 13- 17th

Kids Conquering Sickle Cell Young Adult SC Alliance Session

Day & Time TBA

Place: Virtual

Join us at the National Sickle Cell Disease Association of America’s 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, December 5th, 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