Heart Failure: Early Warning Signs Patients Should Not Ignore
Presenter
Eleanor Weltge, MSN, AGACNP-BC
Houston Methodist
Sickle Cell Disease sessions
Free, live conversations for people living with sickle cell disease, their families and the people caring for them.
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Next session
Less Stress, Better Care: Prepare for Tests, Procedures and Results
· 6:00 PM – 7:00 PM ET · Colin Kloock, MD
Past sessions
October 2026
6:00 PM – 7:00 PM ET Cardiac amyloidosis can be difficult to recognize, and knowing what to watch for may help lead to earlier evaluation and care. Join us to learn about warning signs that should not be overlooked, when to talk with your healthcare team, and what next steps may be recommended. Gain practical knowledge to help you advocate for your heart health. 3:00 PM – 4:00 PM ET Sleep and SCD: The Nighttime Cycle Behind More Pain
Presenter
Ify Osunkwo, MD, MPH
Understanding How Nights Can Shape Pain Days invites people living with sickle cell disease and care partners to learn from a medical expert how poor sleep, breathing issues, stress, and nighttime pain may interact, what symptoms to track, and how to talk with your care team about safer rest and day-to-day management next steps. 6:00 PM – 7:00 PM ET Medication Approvals & Navigating Insurance
Presenter
David Plaza, BSHA, NRCMA, NRCAHA
Houston Methodist
Getting the medication you need can feel overwhelming when insurance approvals, prior authorizations, and unexpected delays get in the way. Join us to learn practical steps for navigating the approval process, working with your care team and insurance provider, and finding resources that may help you access your treatment with greater confidence. 6:00 PM – 7:00 PM ET Navigating the Emotional Ups and Downs of Your Care Journey
Presenter
Valentin Torres, BSN, RN
Houston Methodist
Managing a rare or chronic condition can involve many moving parts, from appointments and testing to treatments and follow-up care. Join us to learn practical ways to stay organized, understand your next steps, communicate with your care team, and feel more confident navigating each stage of your healthcare journey.
September 2026
3:00 PM – 4:00 PM ET Navigating Major Life Transitions With Sickle Cell
Presenter
Krystal Griffin, MS CMHC
Life changes—college, work, relationships, moving, or family planning—can bring added challenges with sickle cell disease. Join this supportive discussion for practical ways to prepare, advocate for your needs, manage stress, and stay connected to your care and community. 6:00 PM – 7:00 PM ET Clinical Trials 101: How to Understand Phases, Data, and Study Results
Presenter
Taxiarchis Kourelis, MD
Mayo Clinic
Clinical trials play an important role in advancing treatment options, but understanding the terminology can be challenging. Learn from Dr. Kourelis how to interpret trial phases, endpoints, study design, results, and key data so you can better understand what research findings may mean for patients and future care. 6:00 PM – 7:00 PM ET Protecting Your Energy: Healthy Boundaries Without Feeling Guilty
Presenter
Kelly Gemmill, MSW, LMSW, MPA
Mayo Clinic
Living with a chronic or rare disease means your energy is valuable. Learn how setting healthy boundaries can help protect your physical and emotional well-being, communicate your needs with confidence, and reduce feelings of guilt while prioritizing the people and activities that matter most. 10:00 AM – 4:00 PM ET 9th annual Chicago Sickle Cell Summit
Presenter
Mark Gladwin, MD
Join the University of Illinois Chicago Community Advisory Board for the 9th Annual Chicago Sickle Cell Summit, a free online symposium focused on hope for sickle cell disease through clinical trials. The event features keynote speaker Mark Gladwin and takes place Thursday, September 24, 2026, from 10:00 AM to 3:00 PM CDT on Zoom. Registration is required. 3:00 PM – 4:00 PM ET How to Stay Hopeful Without Pretending Everything Will Be Okay
Presenter
Khrystal M. Dupre-Myles, DBH, LMSW, CSW
Vanderbilt Health
Hope doesn’t mean ignoring the hard days or pretending everything is fine. Join us to explore realistic ways to hold onto hope while making space for fear, grief, and uncertainty. Gain practical strategies to build resilience, find moments of meaning, and move forward with greater strength through the ups and downs of living with a rare or chronic disease. 6:00 PM – 7:00 PM ET How Lifestyle Medicine Can Help Your Well-Being
Presenter
Ann-Marie Scott, BSN, RN
Mayo Clinic
Small, sustainable lifestyle changes can make a big difference in how you feel. Learn how evidence-based approaches to nutrition, exercise, sleep, stress management, and social support can help improve your overall well-being and become a valuable part of your long-term health journey. 6:00 PM – 7:00 PM ET Patient Empowerment Through Shared Decision Making
Presenter
Teresa Miceli, RN, BSN, OCN
Mayo Clinic
You are the most important member of your healthcare team. Learn how shared decision making can help you ask the right questions, better understand your treatment options, and work alongside your providers to make decisions that reflect your goals, values, and what matters most to you. 3:00 PM – 4:00 PM ET The Future of Care: Gene Therapy for Sickle Cell Disease
Presenter
John Tisdale, MD
NIH
Could gene therapy change what living with sickle cell disease looks like for you or your loved one? Join us to learn how these innovative treatments work, who may be eligible, what the treatment journey involves, and what real-world results are showing. Gain a clearer picture of what these advances could mean for the future of SCD care.