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
About The
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.
About
Cleverly Changing
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.
About
Parent-to-Parent
Initiative
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
sickle cell.
Summit Agenda
Times are in Eastern Time
DAY 1, NOV. 12
2:00
7:00
Check-In/Help Desk
Technical Support
BECAUSE OF YOU, Thank You Caregivers!
5:00
Networking Roundtables
DAY 2, NOV. 13
10:00
Morning Wellness
Activities
11:00
Welcome to the Inaugural Caregivers Summit
Elle Cole
12:00
Fathers: Raising A Warrior
Alonzo Jones, Dare Makun,
Ayo Ayeni
Single Parenting and SCD
Mapillar Dahn, Georgene Glass, Francine Baker
Siblings & Friends:
Supporting Warriors
Faith Davis, Lanita Smith, L'bonne Walker, Barbara Houston
1:00
STRETCH/BREAK
"Sponsor Roundtables"
2:00
Lunch & Learn with
Title Sponsor VERTEX
3:00
Grief: Coping with Grief:
(warrior death)
Dr. Ericka Goodwin
Palliative Care & The Warrior/Caregiver Experience Lakiea Bailey, Doris Bailey
STOOP KIDS: Therapy-guided Workshop for Minor Caregivers
Melissa Victor
4:00
Sickle Cell & Relationships
*CAREGIVER ONLY*
Kristiauna Lattimer, Shana Jackson, Jason Avant,
Michael Hendricks
Spouses: Raising A Warrior Together
Aiyana & Ayize Maat
Education: Supporting your warrior's education
Jaimee Roque
5:00
Ask A Warrior: Panel
6:00
Paint & Chat
Trivia
DAY 3, NOV. 14
10:00
Morning Wellness
Activities
11:00
How families can educate, advocate, and partner with healthcare professionals Andrew Campbell
12:00
Raising A Warrior:
From Child to Adult
*CAREGIVER ONLY*
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
Andrea Matthews
1:00
STRETCH/BREAK
" Sponsor Roundtables"
2:00
Lunch & Learn with Bluebird Bio
3:00
Mourning the loss of potential/plans
*CAREGIVER ONLY*
Dr. Monique Gadson
Finance: Finance and
estate planning
Philip Okwo
Minor caregiver activity *SPARKETH*
Tim Samuel
4:00
Therapy: Therapy for caregivers and self-care/nutrition
*CAREGIVER ONLY*
Dr. Richelle Whitaker
Healthcare Trust: How to build trust with your healthcare team Vanessa Rhodes
6:00
FAMILY GAME NIGHT
Culture Tags
Caregiver Bingo
Caricature Breakout
-SPEAKERS-
ELLE COLE
PHILIP OKWO
DR. RICHELLE WHITTAKER
DR. MONIQUE GADSON
MICHAEL HENDRICKS
JACINA DAVIS
MELISSA VICTOR
ALFONZO JONES
DANIEL BONZIL
NEIL GILBERT
LADONNA JACKSON
KRISTIAUNA LATTIMER
BARBARA HOUSTON
MASTER BURT
DR. ANDREW CAMPBELL