Corewell Health (formerly Spectrum Health) HCM Program – Grand Rapids, Michigan
The Hypertrophic Cardiomyopathy Program at Corewell Health (formerly Spectrum Health) in Grand Rapids, Michigan, was founded in 2013 and recognized as an HCMA Center of Excellence in 2017. The Hypertrophic Cardiomyopathy Program at Corewell Health offers a “comprehensive patient-centered approach to diagnosis, education, and treatment, bringing our resources around our patients wherever possible. We facilitate…
Read MoreBeware of “Alternative” Funding Programs When Choosing your Health Plan
By: Lisa Salberg, Founder and CEO Hypertrophic Cardiomyopathy Association A new health insurance workaround could endanger the health of patients, particularly those with chronic illnesses like hypertrophic cardiomyopathy. This “new” concept is done in an attempt to cut costs for employers. This scheme is dubbed as the “alternative funding program.” In the context of hypertrophic…
Read MoreORCCA Study
The ORCCA study aims to prospectively monitor clinical outcomes in athletes with potentially life‐threatening cardiovascular conditions. The study will assess long‐term cardiovascular outcomes, psychosocial well‐being, and sports eligibility decision‐making in competitive athletes aged 18 to <35 years diagnosed with a cardiovascular condition or borderline finding with potential increased risk of major adverse cardiovascular events. Athletes must…
Read MoreTrial Participation- There is still time to join!
HCM Clinical Trial Opportunities We’ve been urging you to learn a few important points about your disease because HCM has various presentations and important metrics. Knowing the answers to these questions gives a healthcare provider a snapshot of your disease and also facilitates eligibility for clinical trials. Current trials: If you are interested in any…
Read MoreVolunteer!
We have the plan and the road map and, with the help of our volunteers, we will reach our destination to ensure our mission to provide support, education, advocacy and care to those with HCM. To learn more about HCMA volunteer opportunities and get involved, contact julie@4hcm.org or click HERE. Share Your Story (SYS) HCMA…
Read MoreODYSSEY nHCM (aka Hypertrophic Cardiomyopathy without obstruction)
We are looking for HCM patients without obstruction experiencing shortness of breath, palpitations, tiring easily, and want to be in a clinical trial. In this trial, HCM non-obstructed patients will have the opportunity to participate in a myosin inhibitor trial, which assesses the safety and efficacy of mavacamten in this population. Mavacamten is an investigational…
Read MoreThe HCMA Theme for January is Setting Your Plan For The Year
You must advocate for yourself to ensure you get the best care for your HCM. An essential first step is having a plan that includes the tests you will likely need and how often you should see your cardiologist. To make this planning more manageable, the HCMA offers Navigation Calls. Members can take advantage of…
Read MoreSeptal myectomy and alcohol septal ablation: how safe and effective?
Background A new meta-analysis (Yokohama et al. 2023) on the comparative success and safety of the two methods of septal reduction therapy – alcohol septal ablation (ASA; https://4hcm.org/alcohol-septal-ablation/) and septal myectomy (SM; https://4hcm.org/myectomy/) – was just published in European Journal of Cardio-thoracic Surgery. Methods Yujiro Yokoyama and colleagues conducted a meta-analysis of studies that compared…
Read MoreReasonable Accommodations
Through collaboration with Reasonable Accommodations LLC, the HCMA has expanded some of our COE directories. This expansion will make it easier to find travel information, places to eat, lodgings, etc. Only a handful of COE directories have been updated so far, in 2024 we plan on populating the rest. You can check out the new…
Read MoreVolunteer!
Our volunteers give the HCM community so many things to be grateful for! They generously share their hearts, experiences and time to help so many and we are truly thankful for each and every one of you! There are so many more who are willing to be a part of our mission to provide support,…
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