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

Make your voice be heard during Rare Disease Week!

Join Kids Conquering Sickle Cell Disease Foundation during Rare Disease Week at Rare America. 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, but COVID 19 has presented a shift to virtual advocacy.

We look forward to continued advocacy to :

  • Network with advocates around the country to build partnerships and unite to strengthen our community of advocacy.
  • Make a difference on Capital Hill and locally 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.

WHEN: February 22-March 5, 2021 (Virtual Congressional meetings on March 3rd and 4th)

WHAT: Virtual meetings with your Senators and Representative AND virtual advocacy events.

Rare Disease Legislative Advocates (RDLA) organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. Meetings will take place virtually on March 3rd and 4th. The RDLA team also helps to prepare advocates for their meetings, provides legislative resource materials, and hosts pre-meeting training webinars. See below for a full schedule of virtual events!

Week 1: RARE Readiness

Monday, 2/22: Selfie Monday—Post a picture on social media and tag #RareAcrossAmerica2021

Wednesday, 2/24: Fast Forward for Rare Practice Your Pitch Webinar, 2:00pm-3:00pm ET

Thursday, 2/25: Virtual Rare Disease Caucus Briefing, 1:00pm-2:00pm ET

Friday, 2/26: Share Your Rare Story—Take a video and post on social media and tag #RareAcrossAmerica2021

Week 2: RARE Rally

Monday, 3/1: Rare Disease Day at NIH (virtual)—Register on NIH website

Tuesday, 3/2: Prepare for Your Virtual Hill Meetings (One pagers and resources at www.RareAcrossAmerica.org)

Wednesday, 3/3: Virtual Hill Meetings with Senators (12-5 pm ET)

Thursday, 3/4: Virtual Hill Meetings with Representatives (12-5 pm ET)

No prior experience necessary. Registration for this event and all RDLA events are free for rare disease advocates. More information at www.RareAcrossAmerica.org.

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- Rare America

Date: Postponed Until Further Notice (The 2rd Friday of the month)

Time: 7 pm – 8:00 pm

Place: Facebook & YouTube @ 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.

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

Fun Friday Conversations

Date: Saturday, April 24, July 24 &  Oct. 2, 2021

Time: 10am -1pm

Place: Virtual Zoom Session

Topic: The Journey to Effective Care. The session will include the caregiver & advocate perspective with Carla Lewis & Rae Blaylark.

Carla Lewis, (Mother of a Sickle Cell Warrior & CEO of Kids Conquering Sickle Cell) along with Rae Blaylark, (Mom of a Sickle Cell Warrior & CEO of Sickle Cell Foundation of Minnesota) is excited to partnership to share their journey & provide a support resource to parents of a child born with sickle cell or thalassemia. Join this session which will include a panel discussion for parents to have a meaningful educational insight on treatment, mental health support & resources for their journey.

Parent/ Caregivers can register on Eventbrite Today!

https://www.eventbrite.com/e/the-empowered-caregivers-forum-session-i-tickets-138994090065

The Empowered Caregiver Workshop

We Hope See You at Our 2021 Management of Sickle Cell & Chronic Pain Symposium 

Date: June 17 5-7 & June 18 & 19 10-5 EST.

Place: Virtual Via WHOVA App

Come join a time of education and empowerment! Kids Conquering Sickle Cell Disease Foundation invites the community to our 2021 Management of Sickle Cell & Chronic Pain Symposium. We are excited to offer an education conference that will certainly offer a unique opportunity to learn the latest advances in clinical care, transition services, and emerging new therapies including updates for curative treatment options. We have scheduled time for attendees to visit exhibits & also network. We look forward to having a great day of learning & having fun!

Management of Sickle Cell & Chronic Pain Symposium

Place: Virtual

Virtual Walk: May 1- June 19

Join us on May 1 at for Our Walk Kick Off! Come pick up your Swag Bag of Items at Panera Bread Millenia 4060 Conroy Rd, Orlando, FL 32839

Registration:  Open April 7- June 15

Cost: $30 for ages 21 & up / $25 for for ages 20 & below

Make Strides for Sickle Cell Awareness & Support!

Kids Conquering Sickle Cell Disease Foundation invites you, your family & friends to support raising awareness and fundraising for individuals & families impacted by sickle cell disease & related blood disorders! We are excited to invite the community to support our 1st Annual Stride for Sickle Cell Walk/Run/Jog -A-Thon May 1- June 19. Our walk/run/bike a thon will end in celebration of June 19, National Sickle Cell Awareness Day.

The impact & burden families experience from frequent hospitalizations & challenges, along with added the impact of the COVID 19 Pandemic has not stopped, neither has our efforts to help families. We are dedicated to providing vital support services to the community and your support impacts lives.

Team up & walk for a great cause! Gather your family, friends, co-workers and neighbors gearing up to either walk, run, or jog in support of the individuals living with sickle cell disease & associated blood disorders. You can complete your virtual 5k at your preferred location at any time!  Your awareness & fundraising support helps to impact lives while honoring sickle cell warriors who fight this life-threatening disorder daily while also remembering our fallen warriors!

2021 Strides for Sickle Cell Virtual Walk

 

2021

Date: Saturday, July 10, Aug. 14, Sept. 11, Oct. 9, Nov. 13, Dec. 11 (The 2rd Saturday of the month)

Time: 10am – 12:00 pm

Place: Zoom

Cost: Free

Audience: Warriors 16-25 and their caregivers

Registration: Will be on Eventbrite as Feb 1, 2021

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 July 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; 19-25) and simultaneous parent sessions (of 16-21 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: Saturday, Feb , April. 19, June 17, Aug. 21, Sept. 19, Nov  (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 & Chanda Jones, MSW

Voices Institute in collaboration with Kids Conquering Sickle Cell Disease 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: Sept. 16- 18th

Place :Cayenne Wellness 13th Annual Educational  Seminar – 2021

Session time: Friday, Sept. 18  at 10:45 am & 12 pm PST

Place: Virtual- Whova App

Moderator: Carla Lewis

Session Title: Parents Raising A Child Living with Sickle Cell 

Also 12 pm PST Session- Title: Transition

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

Join us at Cayenne Wellness  2021 Seminar!

Registration is required. Please visit www.cayennewellness.org

Cayenne Wellness Seminar - Transition of Young Adults & Adolescents Session & Parents Raising SC Warriors

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, December 18, 2021

Time: 1:00 am-4 pm

Cost: Free

Place: Majestic Life Church

821 S Kirkman Rd. Orlando, FL 32811

Kids Conquering Sickle Cell Disease Foundation is excited to host our Gift of Hope Holiday Bash!

Join us for a fun filled event for families impacted by sickle cell and related blood disorders. Santa’s elves has joined our effort as we created an event to provide educational resources, toys, food, a gift card, a meal and a fun day with surprises!

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.

We are collecting New Toys! Join Our Efforts!

Contact us to be a 2021 Sponsor or to make a donation- admin@kidsconqueringscd.org

 

Kids Conquering Sickle Cell Disease is thankful for our 2020 exhibitors/ sponsors. Together we are educating the community & making a difference!

Thank You to Platinum Exhibitor/ Sponsor: Bluebird bio.

Thank You to our Supporters/ Exhibitors: Medunik USA, Novartis,  GBT, Publix, WAWA, My Three Sicklers, Children’s Medical Services Health Plan

 

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

A Gift of Hope Holiday Bash & Blood Drive

Our Work is Possible Because of Our Partners & Supporters!

Thank You To Our Partners & Supporters