Advancing Sickle Cell Advocacy Project

What Advancing Sickle Cell Advocacy Project does

Advancing Sickle Cell Advocacy Project (ASAP), legally Advancing Sickle Cell Advocacy Project, Inc., is a Florida-incorporated nonprofit established in 2015 and headquartered in Miami. The organization is composed of sickle cell warriors, sickle cell trait carriers, caregivers, and advocates, and is governed by a board led by President Kemba Gosier with a Chief Medical Officer (Ofelia A. Alvarez, M.D.) and a Community Outreach Coordinator who is an APRN (Stephanie Bankston). Its mission is to change the narrative around sickle cell disease (SCD) by raising awareness, educating the community, and advocating on behalf of SCD patients, with a particular focus on bridging gaps between the medical community and sickle cell clients.

ASAP's core offerings are organized around three pillars: (1) the COPE (Community of Parents Empowered) program — a free workshop series launched in September 2021 covering art therapy, music therapy, mindfulness, nutrition, advocacy, and crisis management for families in Broward and Miami Dade counties; (2) virtual and in-person support groups including a monthly peer support group, a teen-only support group, and the C.H.A.T. (Cura Therapy) group for warriors and caregivers navigating bone marrow transplant and gene therapy; and (3) educational workshops, wellness forums, and annual signature events such as the Kevin J Francis Memorial Scholarship & Awards Luncheon, the Mother's/Caregivers Brunch, the Community Picnic and Resources Fair, and the Mind, Body & Soul Wellness Forum. The underlying delivery stack is a conventional digital community platform built on YouTube, social media, Google Forms, Eventbrite, PayPal, and Zelle — no proprietary software, app, or AI component is in use.

The business model is grant- and donation-funded nonprofit operations rather than commercial revenue. All programs and support groups are free to participants; the only priced offering is $75 tickets to the KJF Scholarship Luncheon. Cash inflows consist of individual donations (via PayPal and Zelle), a disclosed $50,000 grant from the GBT Foundation in July 2022, and sponsorships from Global Blood Therapeutics, Florida Blue, Emmaus Life Sciences, and the City of Miami Gardens. The organization operates with 1-10 staff/volunteers, serves a regional South Florida market, and disclosed a strategic partnership with Sickle Cell Medical Advocacy (SCMA) in 2023 to extend its reach on ER and hospital treatment barriers.

Name

Advancing Sickle Cell Advocacy Project

Legal name

Advancing Sickle Cell Advocacy Project, Inc.

Website

https://advancingsicklecelladvocacyproject.org

Company type

Private

Founded year

2015

Operating status

Operating

Headcount range

1–10 employees

Short description

Advancing Sickle Cell Advocacy Project (ASAP) is a Miami-based nonprofit founded in 2015 that delivers free support groups, the COPE family empowerment program, and educational workshops for sickle cell disease warriors, caregivers, and trait carriers in South Florida. It is funded by grants, donations, and corporate sponsorships.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Chronic Disease Support Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Sickle cell advocacy
• Patient support services
• Community health programs
• Caregiver education
• Rare disease awareness

Headquarters

HQ city

Miami

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Pricing tiers

Distribution channels3 records

Marketing channels8 records

Core offering

Advancing Sickle Cell Advocacy Project (ASAP) is a nonprofit organization that delivers free advocacy, education, and support services to individuals and families affected by sickle cell disease. Its core offerings include the COPE family empowerment program, multiple virtual peer support groups, educational workshops and seminars, and annual community events such as the Kevin J Francis Memorial Scholarship & Awards Luncheon. Programs are funded through grants, sponsorships, and donations.

Product overview

Advancing Sickle Cell Advocacy Project (ASAP) is a nonprofit organization providing advocacy, education, and support services for sickle cell disease patients and their families. The organization's core offerings include the COPE (Community of Parents Empowered) program launched in 2021, which provides free workshops in art/music therapy, mindfulness, nutrition, and crisis management for families in Broward and Miami Dade counties. Additional services include virtual support groups (Peer Support, Teen Support, and C.H.A.T. for BMT/gene therapy patients), educational workshops and seminars, health fairs, and community engagement events. The organization also hosts annual signature events including the Kevin J Francis Memorial Scholarship & Awards Luncheon, Mother's/Caregivers Brunch, Community Picnic and Resources Fair, and Mind, Body & Soul Education and Wellness Forum.

Differentiator

Problem solved

Functional benefit

Products and services

• COPE (Community of Parents Empowered) A free empowerment program for parents of sickle cell warriors that combines art therapy, music therapy, mindfulness, nutrition, advocacy training, and crisis management workshops to improve quality of life for affected children in Broward and Miami Dade counties.
• Peer Support Group A free virtual support group for warriors, family members, and anyone impacted by sickle cell disease, held the third Saturday of every month at 2pm EST.
• Teen Support Group A virtual support group for teenagers with sickle cell disease to connect with peers in a space free from parents, held the fourth Saturday of each month at 6pm EST.
• C.H.A.T. (Cura Therapy Support Group) A safe, welcoming virtual support space for warriors and caregivers navigating bone marrow transplant and gene therapy curative treatments, accommodating successful, unsuccessful, or pending treatment outcomes.
• Be Informed Educational Workshops and Seminars Educational workshops and seminars focused on sickle cell disease awareness, patient treatment, and bridging the gap between the medical community and sickle cell clients.
• Kevin J Francis Memorial Scholarship & Awards Luncheon Annual scholarship awards event for the sickle cell community, held at the Miami Shores Country Club with tickets priced at $75 per person under the 'Anchored in Faith, Rising in Hope' theme.
• Annual Mother's/Caregivers Brunch Annual brunch event honoring and supporting mothers and caregivers of sickle cell warriors.
• Annual Community Picnic and Resources Fair Annual community gathering providing resources and support for sickle cell patients and families.
• Annual Mind, Body & Soul Education and Wellness Forum Annual wellness forum providing education on holistic health approaches for the sickle cell community.

Quantifiable outcome

• The COPE program started in September 2021 with 14 families from Broward and Miami Dade county.

Segments6 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

One partnership is on record.

• Sickle Cell Medical Advocacy (SCMA)coreStrategic or Co-development Partner · 1 January 2023SCMA has been a proud partner since 2023. Founded in 2021 by Dr. Simone Uwan, SCMA is the only nonprofit taking a nationwide approach to sickle cell healthcare with curriculum-based training and patient education. The organization has trained 60+ health navigators across 21 states and served 300+ SCD patients, contributing over 8,500 volunteer hours. SCMA and ASAP share a mission of dismantling barriers to effective ER and hospital treatment for SCD patients.

Recent moves6 records

Expansion highlights5 records

Direct peers

• Sick Cells: Sickle cell patient advocacy nonprofit focused on policy, awareness, and community storytelling. Comparable in mission to ASAP, with stronger national policy footprint and similar reliance on social media and patient narratives.
• Cayenne Wellness Center: California-based sickle cell nonprofit providing support groups, education, and community programs. Overlaps directly with ASAP's peer support and educational workshop lines, and similarly engages SCD providers and pharma sponsors.
• Children's Sickle Cell Foundation: Pittsburgh-based nonprofit serving children with sickle cell disease and their families through support groups and educational programs. Directly comparable to ASAP's family-facing COPE program and teen support focus.
• Sickle Cell Foundation of Georgia: Regional sickle cell nonprofit providing education, patient support, and advocacy services in Georgia. Comparable regional nonprofit model to ASAP, with similar reliance on community programs, donor support, and partnerships with SCD-focused pharma.
• Sickle Cell Disease Association of America (SCDAA): National umbrella organization for sickle cell advocacy, education, and patient support. Directly comparable mission to ASAP, with a nationwide chapter network that includes regional affiliates serving overlapping patient and caregiver populations.
• Sickle Cell Medical Advocacy (SCMA): Nationwide sickle cell advocacy and health navigator training nonprofit founded in 2021. Directly comparable mission; explicitly listed as an ASAP strategic partner, sharing focus on dismantling ER and hospital treatment barriers for SCD patients.
• Martin Center Sickle Cell Initiative: Indiana-based SCD advocacy and family support nonprofit. Comparable community-driven support, education, and caregiver empowerment model to ASAP's regional focus.

Broad incumbents

• Sickle Cell Coalition: National coalition convening SCD-focused nonprofits, providers, and advocates. Comparable broad advocacy and coalition-building mission; operates at a larger, more national scale than ASAP.

Emerging players

• Sickle Cell Transplant Alliance: Alliance focused on expanding access to curative transplants and gene therapy for SCD. Directly relevant to ASAP's C.H.A.T. support group for BMT and gene therapy patients, addressing an overlapping beneficiary population.
• Sickle Cell Community Advisory Council: Community-led advisory council amplifying sickle cell patient and caregiver voices in research, policy, and care delivery. Overlaps with ASAP's lived-experience advocacy and bridge-to-medical-community positioning.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/asapbeinformed
• YouTubeyoutube.com/channel/UCAK-nmoozEYj_rJvpJUWCsw
• Facebookfacebook.com/AsapBeInformed
• Instagraminstagram.com/asapbeinformed

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

Funding overview

Funding rounds1 record

Investors1 record

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Advancing Sickle Cell Advocacy Project