What To Expect
The Sickle Cell Community Consortium (SC3) is delighted to present our Inaugural Caregiver Summit in partnership with Elle Cole of CleverlyChanging (Coordinator), the Parent-2-Parent Initiative, and sickle cell community patients and caregivers throughout the country. We invite you to join us for two days of engaging dialogue, dynamic speakers and to hear from innovative voices within the sickle cell community. Attendees will have an opportunity to share information about how they are navigating life with their loved ones. Discuss best practices for hospitalizations and times when intervention is needed. We will deepen connections and build new relationships as we discuss our unique experiences. Each day, we will gather to explore
over 11 different sessions.
MEET THE HOSTS
Sickle Cell Community Consortium
The Sickle Cell Community Consortium is a US-based non-profit formed in 2014 to “harness and amplify the power of the patient voice”. The Consortium is comprised of sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners and medical and research advisers. These stakeholders collectively form the General Assembly of CBOs and Advocates, the decision-making body of the Consortium. The Consortium acts as an organizing entity providing the framework for the stakeholders of the General Assembly to apply a model of Collective Impact to define problems and gaps in the sickle cell community, identify strategies to address those needs and gaps, and determine the CBO, Community, and Corporate partnerships best equipped to implement those strategies to achieve significant and sustainable change.
Cleverly Changing is a go-to blog for tips on health, finance, parenting, and more.
CleverlyChanging.com was created in May 2010 as an outlet to help me share information I learned. My twin daughters were almost 24 months and I wanted to replace the many hours I had previously spent breastfeeding doing something else productive.
One of my missions on my blog is to bring awareness to the forefront about Sickle Cell Anemia and healthy-living. I share the highs and lows of parenting a child with Sickle Cell Disorder and Type 1 Juvenile Diabetes.
Through Cleverly Changing I believe, together, we can help empower and inspire others to live cleverly, changing when necessary. It is also my goal to raise my daughters to be healthy women that love life and have enough self-awareness to believe they will move mountains. I want my children to live fearlessly and take calculated and educated risks.
The Parent to Parent Initiative, powered by the Sickle Cell Community Consortium, is a unified platform of parents and caregivers focused on building connections, increasing access to education and resources, and promoting advocacy through a national parent to parent network of families living with
Times are in Eastern Time
DAY 1, NOV. 12
BECAUSE OF YOU, Thank You Caregivers!
DAY 2, NOV. 13
Welcome to the Inaugural Caregivers Summit
Fathers: Raising A Warrior
Alonzo Jones, Dare Makun,
Single Parenting and SCD
Mapillar Dahn, Georgene Glass, Francine Baker
Siblings & Friends:
Faith Davis, Lanita Smith, L'bonne Walker, Barbara Houston
Lunch & Learn with
Title Sponsor VERTEX
Grief: Coping with Grief:
Dr. Ericka Goodwin
Palliative Care & The Warrior/Caregiver Experience Lakiea Bailey, Doris Bailey
STOOP KIDS: Therapy-guided Workshop for Minor Caregivers
Sickle Cell & Relationships
Kristiauna Lattimer, Shana Jackson, Jason Avant,
Spouses: Raising A Warrior Together
Aiyana & Ayize Maat
Education: Supporting your warrior's education
Ask A Warrior: Panel
Paint & Chat
DAY 3, NOV. 14
How families can educate, advocate, and partner with healthcare professionals Andrew Campbell
Raising A Warrior:
From Child to Adult
Jacina Davis, Maria Rivera, Doris Bailey, Daniel Bonzil, Neil Gilbert
Transition: Helping them Grow, Letting them Go Supporting your teenager as they grow into adulthood
" Sponsor Roundtables"
Lunch & Learn with Bluebird Bio
Mourning the loss of potential/plans
Dr. Monique Gadson
Finance: Finance and
Minor caregiver activity *SPARKETH*
Therapy: Therapy for caregivers and self-care/nutrition
Dr. Richelle Whitaker
Healthcare Trust: How to build trust with your healthcare team Vanessa Rhodes
FAMILY GAME NIGHT
DR. RICHELLE WHITTAKER
DR. MONIQUE GADSON
DR. ANDREW CAMPBELL