Sickle Cell Advocates of Rochester
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
Gladys Magee
Director,
Community Advocate
Dr. Tiffany Pulcino
Physician Champion
Stephanie Ramos
Community Advocate
Anika Griffiths
Community Advocate,
Communication Specialist
Theresa Carter, MS, RN
Community Advocate
Emma Goodwin
Social Media
Communication Specialist
September is National Sickle Cell Awareness Month!
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
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 . .
Community Events and Partnerships
Sickle Cell Advocates of Rochester is proud to engage with organizations and members of our community.
Please click through to see information on donating and directions!
Please click through to see information on donating and directions!
Describe your image
Moments from our Paint Through Your Pain Event
Seven Year Old Sickle Cell Patient Shares Her Story in the Hospital With Mother's Permission
Describe your image
Describe your image
Describe your image
Describe your image
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
Health Fairs
Here are some of the health fairs and events SCAR has been and will be a part of!
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Improved access to health care services.
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Increased health and screening.
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Better understanding between community members and the health and social service system.
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Enhanced communication between community members and health providers.
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Increased use of health care services.
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Improved adherence to health recommendations.
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Reduced need for emergency and specialty services.
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:
Source: https://www.nhlbi.nih.gov/health/educational/healthdisp/role-of-community-health-workers.htm
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!
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:
Media
See our features on podcasts, informational videos, and more!