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. 

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Caregiving

Learn how to cope and support someone with SCD as a dad, mom, sibling, guardian, or friend.

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Bridging Empathy

Learn best practices for how to care for yourself and your loved one.

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Knowledge

Particpate in giveaways, lunch and learn sessions, and family activities. The information received will help you as you partner with your loved one's care team.

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Compassion

Get advice on how to maintain a healthy relationship with an SCD warrior. Also, meet and connect with other caregivers.

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-

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MARIA RIVERA

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ELLE COLE

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DR. ERICKA GOODWIN

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PHILIP OKWO

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MAPILLAR DAHN

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DR. RICHELLE WHITTAKER

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ANDREA MATTHEWS

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DR. MONIQUE GADSON

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GEORGENE GLASS

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MICHAEL HENDRICKS

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AYIZE & AIYANA MA'AT

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JACINA DAVIS

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BARBARA

HOUSTON

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LANITA SMITH

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REWO OSHE

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VANESSA RHODES

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MELISSA VICTOR

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ALFONZO JONES

JAIMEE ROQUE

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JASON AVANT

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TIM SAMUEL

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BIBA TINGA

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MAGGIE JALOWSKY

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FAITH DAVIS

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FRANCINE BAKER

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L'BONNE WALKER

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DANIEL BONZIL

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NEIL GILBERT

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LADONNA JACKSON

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KRISTIAUNA LATTIMER

BARBARA HOUSTON

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MASTER BURT

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DR. ANDREW CAMPBELL

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#scdcaregiverlife