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Mission Statement

Our purpose is to connect and educate people living with sickle cell, the public, and medical professionals. We work to support patients and families affected by sickle cell in the local Rochester area; hosting educational and social events, fundraising for our academic scholarship, and lifting up each others’ voices. Stronger together and ever rising, we work to enrich the health and lives of people living and thriving with sickle cell.

The Team

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Gladys Magee
Director,
Community Advocate

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Dr. Tiffany Pulcino

Physician Champion

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Stephanie Ramos
Community Advocate

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Anika Griffiths
Community Advocate,
Communication Specialist

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Theresa Carter, MS, RN
Community Advocate

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Emma Goodwin

Social Media

Communication Specialist

September is National Sickle Cell Awareness Month!

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Our Vision

Closing gaps in Sickle Cell Disease care to improve the lives and outcomes of individuals with SCD/SCT through:

 Networking - Connecting with other advocates and support groups within the Upstate New York Region and NYC. 

Sickle cell disease is most common in African-Americans, but also occurs in Hispanic, Mediterranean, Middle Eastern and Indian communities.

Rochester |  New York City | Buffalo | Syracuse | Albany

 

Advocacy – Hosting awareness and educational campaigns to improve hospital, clinical, and community base advocacy via public and physician training on sickle cell treatment in the community

-Transition to Adult Care Program

 

Research – Sharing clinical research and drug development advancements of current therapeutics

 

Fundraising - Providing a scholarship for young adults with sickle cell, promoting patient assistance programs or direct services Payers, improving sponsorship with donors

Legislative Advocacy –Federal policy and legislation support to shape public policy and enable communities to be more engaged in current priorities

 

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Participate in Research Study on Impact of Chronic Pain 

 

Help researchers learn more about the impact of chronic pain on children and young adults. SPiRIt (Sickle Pain-Related Impact) is a research study approved by the Emory University Institutional Review Board collecting information via questionnaires and interviews. Compensation will be offered. For more information, contact the study team at                                                      . If you are interested in participating, complete the screening form                       .   . 

Our Partners
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Community Events and Partnerships

Sickle Cell Advocates of Rochester is proud to engage with organizations and members of our community.

Please click the Eventbrite button to buy tickets, see event itinerary, and directions!

For questions about this event, please email 

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Moments from our Paint Through Your Pain Event

Seven Year Old Sickle Cell Patient Shares Her Story in the Hospital With Mother's Permission

Stronger together at the 4th Annual Sickle Cell Awareness Walk in Delaware Park

Snapshots from our 6/18 Sickle Cell Jazz Jubilee

Blood Drives

Upcoming

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Health Fairs

Here are some of the health fairs and events SCAR has been and will be a part of!

  • Improved access to health care services.

  • Increased health and screening.

  • Better understanding between community members and the health and social service system.

  • Enhanced communication between community members and health providers.

  • Increased use of health care services.

  • Improved adherence to health recommendations.

  • Reduced need for emergency and specialty services.

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Community Health Workers (CHWs)

We work with and empower others serving people with sickle cell in our communities.

What is a CHW?

According to the National Institute of Health, "[c]ommunity health workers (CHWs) are lay members of the community who work either for pay or as volunteers in association with the local health care system in both urban and rural environments. CHWs usually share ethnicity, language, socioeconomic status, and life experiences with the community members they serve. They have been identified by many titles, such as community health advisors, lay health advocates, promotoras, outreach educators, community health representatives, peer health promoters, and peer health educators. CHWs offer interpretation and translation services, provide culturally appropriate health education and information, help people get the care they need, give informal counseling and guidance on health behaviors, advocate for individual and community health needs, and provide some direct services such as first aid and blood pressure screening. Since CHWs typically reside in the community they serve, they have the unique ability to bring information where it is needed most. They can reach community residents where they live, eat, play, work, and worship. CHWs are frontline agents of change, helping to reduce health disparities in underserved communities."
Source: https://www.nhlbi.nih.gov/health/educational/healthdisp/role-of-community-health-workers.htm

How Can a CHW Help?

Community Health Workers' services work for:

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How Can I Become a CHW?

Want to make a difference in the lives of people in your community?  There are many CHW trainings and programs to help you!

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Contact Us

Office Phone: 585-413-1485 

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  • LinkedIn
  • YouTube
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Our Newsletter

Sign up to have the Sickle Cell Advocates of Rochester newsletter emailed to you! Stay in the loop on our upcoming events, advocacy opportunities, sickle cell news, and make sure to check out our arts and leisure section too!

Share Your Story!

We would love to hear your story! Sharing a story about your personal Sickle Cell experiences can provide encouragement and support to others. Make a difference in the life of another by sharing your poetry, song lyrics, inspirational quotes, drawings, or photos. Email your story to: 

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Media

See our features on podcasts, informational videos, and more!

Seven Year Old Sickle Cell Patient Shares Her Story in the Hospital With Mother's Permission

Merch

Proceeds contribute towards our scholarship for young adults with sickle cell pursuing higher education. Please contacts us for questions or to order our merchandise.
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