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X-ORIGINAL-URL:https://sicklecelloklahoma.org
X-WR-CALDESC:Events for Supporters of Families with Sickle Cell Disease
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DTSTART;TZID=America/Indiana/Indianapolis:20260305T183000
DTEND;TZID=America/Indiana/Indianapolis:20260305T210000
DTSTAMP:20260419T034809
CREATED:20260303T194133Z
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UID:18776-1772735400-1772744400@sicklecelloklahoma.org
SUMMARY:Hands Across Oklahoma
DESCRIPTION:Rare Disease Town Hall Meeting\nA Virtual Community Conversation\nSupporters of Families with Sickle Cell Disease\, Inc.\, in collaboration with Oklahoma Rare\, invites you to join us for an important statewide virtual town hall focused on rare diseases. \nThis community-centered discussion is designed to bring together individuals\, families\, caregivers\, advocates\, and professionals to share information\, resources\, and collective action strategies that support those affected by rare diseases across Oklahoma. \nTogether\, we are building stronger connections\, increasing awareness\, and strengthening advocacy efforts throughout our state. \n\nEvent Details\nDate: Thursday\, March 5\, 2026Time: 6:30 PMFormat: Virtual Meeting (Zoom) \nMeeting ID: 838 5024 4668Passcode: 022605 \nRegister in advance:https://us02web.zoom.us/meeting/register/5jviz3t1RKaOctL8ffRiBQ#/registration \n\nAbout the Town Hall\n“Hands Across Oklahoma” is more than a meeting — it’s a movement toward collaboration and community empowerment. \nParticipants will: \n\n\nEngage in an informative and interactive discussion \n\n\nLearn about resources available to rare disease families \n\n\nConnect with advocacy leaders and organizations \n\n\nShare experiences and identify common challenges \n\n\nExplore solutions to improve access\, care coordination\, and support services \n\n\nThis town hall aims to strengthen partnerships across Oklahoma to better serve individuals and families living with rare diseases. \n\nFeatured Speakers\nSky Collins\nFounder\, Oklahoma Rare \nSky Collins is a passionate advocate dedicated to supporting and uniting Oklahoma’s rare disease community. Through Oklahoma Rare\, she works to amplify patient voices and foster collaboration among stakeholders. \nVelvet Brown-Watts\nExecutive DirectorSupporters of Families with Sickle Cell Disease\, Inc. \nVelvet Brown-Watts is a leader in advocacy and community-based care\, committed to improving systems of support for families impacted by sickle cell disease and other rare conditions. \n\nWho Should Attend?\n\n\nIndividuals living with rare diseases \n\n\nParents and caregivers \n\n\nHealthcare professionals \n\n\nSocial workers and case managers \n\n\nNonprofit leaders \n\n\nPolicy advocates \n\n\nCommunity stakeholders \n\n\nIf you care about strengthening support systems for rare disease families in Oklahoma\, this conversation is for you. \n\nWhy This Matters\nRare diseases impact thousands of Oklahoma families\, often creating unique medical\, emotional\, and financial challenges. Community dialogue and coordinated advocacy are essential to improving outcomes. \nBy coming together\, we can: \n\n\nIncrease awareness \n\n\nExpand access to care \n\n\nImprove policy advocacy \n\n\nStrengthen community support networks \n\n\nJoin us as we stand together — hands across Oklahoma — to ensure no family facing a rare disease stands alone.
URL:https://sicklecelloklahoma.org/event/hands-across-oklahoma/
CATEGORIES:Education
ATTACH;FMTTYPE=image/jpeg:https://sicklecelloklahoma.org/wp-content/uploads/2026/03/202611-Hands-Across-Oklahoma.jpg
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DTSTART;TZID=America/Indiana/Indianapolis:20260312T180000
DTEND;TZID=America/Indiana/Indianapolis:20260312T200000
DTSTAMP:20260419T034809
CREATED:20260303T210752Z
LAST-MODIFIED:20260303T210752Z
UID:18783-1773338400-1773345600@sicklecelloklahoma.org
SUMMARY:Vertex Gene Therapy Overview for Sickle Cell Disease
DESCRIPTION:Educational Webinar Presented by Supporters of Families with Sickle Cell Disease\, Inc.\nSupporters of Families with Sickle Cell Disease\, Inc. invites you to join us for an educational presentation focused on emerging gene therapy options for sickle cell disease. \nThis session will provide important information about a Vertex gene therapy and what it may mean for individuals and families living with sickle cell disease. As treatment options evolve\, it is essential that patients\, caregivers\, and community members have access to accurate\, understandable information to help them make informed decisions. \n\nEvent Details\nDate: March 12\, 2026Time: 6:00 PMLocation: Live via Zoom \nMeeting ID: 816 4717 4346Passcode: 778665 \nRegister here:https://us02web.zoom.us/meeting/register/ad7ggjbYRQicMlv9T11D4Q \n\nAbout the Presentation\nThis educational webinar will: \n\n\nProvide an overview of Vertex’s gene therapy for sickle cell disease \n\n\nExplain how gene therapy works in simple\, understandable terms \n\n\nDiscuss who may be eligible \n\n\nOutline what patients and families can expect during the process \n\n\nOffer an opportunity to learn more about emerging treatment advancements \n\n\nThe goal of this session is education and awareness — empowering families with knowledge about evolving therapeutic options. \n\nFeatured Speaker\nWanda Vazquez\, MBA\nPatient Educator Senior ManagerHematology Marketing\, Vertex \nWanda Vazquez serves as a Patient Educator Senior Manager in Hematology Marketing at Vertex. She brings experience in patient education and outreach\, helping individuals better understand treatment options and resources available to them. \n\nWho Should Attend?\n\n\nIndividuals living with sickle cell disease \n\n\nParents and caregivers \n\n\nHealthcare professionals \n\n\nCommunity advocates \n\n\nSocial workers and case managers \n\n\nAnyone interested in learning about gene therapy advancements \n\n\n\nWhy This Conversation Matters\nSickle cell disease has historically had limited treatment options. Advances in gene therapy represent a significant moment in the evolution of care. Access to clear\, accurate educational information allows families to engage in meaningful conversations with their healthcare providers about potential options. \nJoin us for this important educational session and stay informed about innovations shaping the future of sickle cell care.
URL:https://sicklecelloklahoma.org/event/vertex-gene-therapy-overview-for-sickle-cell-disease/
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DTSTART;TZID=America/Indiana/Indianapolis:20260321T110000
DTEND;TZID=America/Indiana/Indianapolis:20260321T130000
DTSTAMP:20260419T034809
CREATED:20260313T144701Z
LAST-MODIFIED:20260313T150007Z
UID:18794-1774090800-1774098000@sicklecelloklahoma.org
SUMMARY:Health is Wealth: Spring Nutrition & Food Distribution Program
DESCRIPTION:Join us for our Health is Wealth: Spring Nutrition & Food Distribution Program\, a community initiative designed to support families living with Sickle Cell Disease (SCD) by providing access to healthy foods and valuable nutrition education. \nThis event offers families the opportunity to receive fresh food items while also participating in a short educational session focused on the importance of nutrition and wellness. Our goal is to empower families with knowledge and resources that promote healthier lifestyles and improved overall well-being. \nParticipants must attend a mandatory education session at the beginning of the event. Please note that arrival after the education session will disqualify participation\, so we encourage families to arrive on time. \nEvent Details\nDate: Saturday\, March 21\, 2026Time: 11:00 AM – 1:00 PM \nMandatory Education Session:11:05 AM – 11:15 AM \nEvent Locations\nTulsa Families with SCDWinCo Foods7130 S Memorial Dr.Tulsa\, OK 74133 \nOklahoma City Families with SCDWinCo Foods3535 NW 39th StreetOklahoma City\, OK 73112 \nRegistration Deadline\nWednesday\, March 18\, 2026 at 12:00 PM \nFamilies must register before the deadline to participate. \nThis program is part of our ongoing commitment to supporting the health and well-being of families affected by sickle cell disease across Oklahoma. \nFor more information\, visit www.sicklecelloklahoma.org or contact: \n\n\nAdrian – Tulsa CHW: 918-407-0285 \n\n\nZanade – OKC CHW: 405-626-1145
URL:https://sicklecelloklahoma.org/event/adaptive-easter-eggstravaganza-2/
ATTACH;FMTTYPE=image/jpeg:https://sicklecelloklahoma.org/wp-content/uploads/2026/03/Health_Is_Wealth_Spring_2026_5_2.jpg
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DTSTART;TZID=America/Indiana/Indianapolis:20260326T183000
DTEND;TZID=America/Indiana/Indianapolis:20260326T210000
DTSTAMP:20260419T034809
CREATED:20260303T193919Z
LAST-MODIFIED:20260303T194828Z
UID:18772-1774549800-1774558800@sicklecelloklahoma.org
SUMMARY:Webinar: Advocacy\, Access & Action
DESCRIPTION:“It’s Not Just a Diagnosis — It’s a Life” \nWhy Social Services Are Essential in Sickle Cell Care \nSupporters of Families with Sickle Cell Disease\, Inc. invites you to an important and timely conversation about the real-life impact of sickle cell disease — and why medical care alone is not enough. \nSickle cell disease is more than a diagnosis. It affects families\, livelihoods\, education\, mental health\, and long-term stability. True care requires advocacy\, coordinated services\, and access to community-based support systems that help individuals move from crisis survival to stability and dignity. \nThis powerful webinar will explore how integrated care and social services transform outcomes for individuals and families living with sickle cell disease. \nWhat You’ll Learn \n\nWhy sickle cell care must go beyond emergency treatment\nThe critical role of social workers and case managers\nHow advocacy improves access to healthcare and community resources\nStrategies for building integrated care models\nPractical ways families and providers can take action\n\nWhether you are a healthcare provider\, social worker\, community advocate\, policymaker\, caregiver\, or someone personally impacted by sickle cell disease\, this session will provide insight\, tools\, and inspiration. \nFeatured Speaker \nVelvet Brown-Watts \nCEO/Founder\, MSW\, CM\, CHC\nSupporters of Families with Sickle Cell Disease\, Inc. \nVelvet Brown-Watts is a dedicated advocate and leader committed to improving systems of care for individuals and families affected by sickle cell disease. Through her work\, she champions integrated care\, patient advocacy\, and equitable access to essential social services. \nEvent Details \nDate: March 26th\nTime: 6:30 PM\nLocation: Live on Zoom \nMeeting ID: 819 4645 7773\nPasscode: SCDMatters \nRegister here:\nhttps://us02web.zoom.us/meeting/register/Vp5cDXjhTVy0SRdycalg6Q \nWhy This Conversation Matters \nFamilies affected by sickle cell disease often face barriers that extend far beyond hospital walls — including housing instability\, employment challenges\, insurance gaps\, transportation barriers\, and lack of coordinated care. \nWhen social services are integrated into healthcare delivery: \n\nHospital readmissions decrease\nPatient trust increases\nCare coordination improves\nFamilies gain stability\nQuality of life improves\n\nThis webinar is part of our ongoing commitment to education\, advocacy\, and action in the sickle cell community. \nWho Should Attend? \n\nHealthcare providers\nSocial workers and case managers\nNonprofit leaders\nCommunity advocates\nStudents in health and social sciences\nIndividuals and families impacted by sickle cell disease\n\nJoin us as we move the conversation forward — from diagnosis to dignity\, from crisis to coordinated care\, and from awareness to action. \nBecause it’s not just a diagnosis. It’s a life.
URL:https://sicklecelloklahoma.org/event/webinar-advocacy-access-action/
CATEGORIES:Education
ATTACH;FMTTYPE=image/png:https://sicklecelloklahoma.org/wp-content/uploads/2026/03/2026-AAA-It-a-Life.png
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DTSTART;TZID=America/Indiana/Indianapolis:20260328T130000
DTEND;TZID=America/Indiana/Indianapolis:20260328T150000
DTSTAMP:20260419T034809
CREATED:20260313T144411Z
LAST-MODIFIED:20260313T144411Z
UID:18788-1774702800-1774710000@sicklecelloklahoma.org
SUMMARY:Adaptive Easter Eggstravaganza
DESCRIPTION:Join us for a joyful and inclusive Adaptive Easter Eggstravaganza\, designed especially for families who benefit from sensory-friendly and adaptive activities. This special event provides a welcoming environment where children of all abilities can celebrate Easter through fun\, engaging\, and accessible experiences. \nThe event will feature adaptive egg hunts\, quiet sensory zones\, and family-friendly activities that ensure every child can participate comfortably and safely. Our goal is to create a supportive and joyful atmosphere where smiles are guaranteed and families can make lasting memories together. \nLunch will be provided\, so families can relax\, connect with others in the community\, and enjoy a festive afternoon. \nEvent Details\nLocation:Southern Oaks Community Center400 SW 66th StOklahoma City\, OK 73139 \nDate: Saturday\, March 28Time: 1:00 p.m. – 3:00 p.m. \nFamilies are warmly invited to come celebrate Easter in a sensory-friendly\, inclusive environment where everyone can participate and have fun. \nThis event is made possible through the collaboration of community organizations committed to supporting inclusive opportunities for children and families in Oklahoma.
URL:https://sicklecelloklahoma.org/event/adaptive-easter-eggstravaganza/
ATTACH;FMTTYPE=image/jpeg:https://sicklecelloklahoma.org/wp-content/uploads/2026/03/Easter_Eggstravaganza_-_Adaptive_-_Print_-_8.5x11-scaled.jpg
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