Happy Spring!
April brings some great opportunities for the HCMA community to get involved, volunteer, and educate. The Elizabeth T. McNamee Legistaltive Advocacy Committee has been hard at work and is deploying phonebanks to help spread the word to state-level legislative members to begin the task of implementing the HCM Act. https://4hcm.org/hcm-act/
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All of April: Online Discussion Groups
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Browse our April Discussion Groups to find one that fits you
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Mondays and Thursdays starting April 11th: Legislative Advocacy Call Block Events
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May 12th: Bighearted Warrior Tour at Advent Health, Orlando FL
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6:00pm EST: Discussions include different clinical presentations of CHF, Atrial Fibrillation Ablation as a treatment option, differences in Septal Myectomy, HCM Transplant Pathway and more! Click here for agenda and registration.
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Amy Mann
HCMA Meeting Coordinator
HCM Academy
HCM Academy, our innovative peer-to-peer CME accredited educational program which launched this year has been highly successful and well-received by its participants. Geared towards medical professionals - particularly general practitioners, primary care physicians, and community cardiologists, it aims to improve care and find the undiagnosed. As HCMA members, please help us get the word out! You can refer your health care providers from the HCMA website https://4hcm.org/hcm-academy/.
So far we have had 64 workshops scheduled, many of which have already been delivered. In addition to the workshops, there are online modules for healthcare professionals to further their knowledge. At the HCMA we are very excited about this new program and plan to grow it to improve care for all those with HCM.
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Ross Hadley
Project Manager
The project management team is all about efficiency this month—efficiency for our clients, members, staff, Centers of Excellence, and committees. My work is on back-end support of technology, process framework, training, and implementation.
Operations: One of the projects is moving our client intake and navigation call data collection to RedCap, an industry-standard platform. We are working with Vanderbilt University on this project, and I am very pleased with the progress to streamline data collection and reporting.
Advocacy: The Elizabeth T McNamee Advocacy Committee is gearing up for call nights to reach out to legislators regarding the HCM Act. Sign up today for a call block and help us raise awareness!
Trials: The Imbria Improve Study and Celltrion CT-G20 1.2 have open surveys and are actively recruiting patients for clinical trials. Please support these efforts and assist our community in searching for solutions.
Partnerships: Behind the scenes work continues on assisting with sharing patient stories, creating new educational content, building awareness, and increasing our advocacy network to amplify the importance of early diagnosis, referral to high volume centers, and co-branded content for the medical community.
HCM Academy: If you receive care outside a Center of Excellence, please refer your care team to the HCM Academy. They can earn free continuing education credits online and learn more about HCM care!
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Stacey Titus
Center of Excellence Coordinator
COE Update
Happy Spring! It is truly an exciting time here as the Center of Excellence Coordinator at the HCMA. We are finally getting back on the road for in-person site visits at potential new HCMA Recognized Centers of Excellence. Please stay tuned as we hope to bring you some new additional HCMA recognized programs shortly.
All HCMA Recognized COE programs can still record up to 12 minutes segments to give updates on your Recognized Center of Excellence. These updates will be posted on our directory listing page. Please get in touch with me to update your directory listing today! Visit our current directory listings here: https://4hcm.org/directory/.
For more information on HCMA Recognized Centers of Excellence, visit https://4hcm.org/center-of-excellence/.
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Julie Russo
Volunteer Coordinator
Share Your Story
Our Share Your Story AND Legislative Advocacy Volunteers Unite!! We are embarking on a unique opportunity that combines the efforts of two of our amazing volunteer groups, our “Share Your Story” volunteers and our “Legislative Advocacy” volunteers. We are looking for HCM stories from patients in every state as we move forward with our legislative initiative to find the undiagnosed. The legislation we seek to introduce and pass at the state level is called the "Healthy Cardiac Monitoring Act" (HCM Act). To view this proposed legislation, click the following link: Health Cardiac Monitoring Act - Hypertrophic Cardiomyopathy Association (4hcm.org) Our state legislators may need facts and statistics (of which we have plenty!) but patient stories are also key! Providing patient stories from actual constituents of a state representative makes the HCM Act more relatable. They are more likely to support it because YOU are who they represent!
If you have already volunteered to share your story, we will be in touch soon! If you have not yet volunteered, but want to share your story, you need only to sign up from our website by clicking the following link: https://bit.ly/3DNBKJI
Under "Projects" choose "Share My Story Volunteer Group".
Legislative Advocacy
Call Block Events
Let’s start advocating together! Every month, starting April 2022, we will be setting up “Call Block Events” for volunteers to join together as a team to call state legislators and spread the word about the “Healthy Cardiac Monitoring Act” (HCM Act). You only need a computer and a phone to participate.
At the beginning of each call block event (held via Zoom), we will provide instruction/guidance and the scripts needed to bring a concise message to our state representatives to make this effort a success. It’s an easy (and fun) process, but there are a lot of contacts to reach! The more volunteers we have, the quicker we can get through the call lists and get on to the next steps. Our goal is to advance the HCM Act to law in every state! Your voice is important! There will be HCMA staff members and Legislative Committee members available on each call block session to assist every step of the way. To register for call block events, click the following link to our website calendar to find the date(s) that best fit your schedule: Calendar - Hypertrophic Cardiomyopathy Association (4hcm.org)
Click on and Share This Link!
If you have not already done so, it only takes a few clicks to save lives. Click here to contact your state representatives and show your support for the HCM Act (and share this link with others!) Contact your state officials. Share your story and you may just save a life! Take one minute to...click here.
If you would like to volunteer for this project, click the following link: https://bit.ly/3DNBKJI Under "Projects" choose " Elizabeth T. McNamee LEGISLATIVE ADVOCACY VOLUNTEER GROUP".
Free Online Patient
Discussion Groups
Our HCMA theme for April 2022 is “Genetics-Family History/Communicating (Genetics/Family History) with Family”.
While our online support group leaders have set themes and titles for their group meetings, they are also ready to facilitate group discussions around this important topic with their participants. Our online discussion group meetings are recurring, but you must register for each meeting date. Our meeting dates, times, and topics are updated regularly, so check our event calendar regularly to join a meeting (or more than one) best suited for you!
To view our event calendar and our discussion group leader bios, please click the link below:
As always, if you have any questions about our volunteer projects, you can reach me via email at julie@4hcm.org. We truly appreciate the many generous people who donate their time and talent to advocate for and support our community.
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Sabrina Cuddy
Intake Coordinator
Ablation for Arrhythmia
It is important to remember that ablation for arrhythmia is not the same as alcohol septal ablation for septal reduction.
When drug treatment does not control arrhythmias, it is sometimes possible to treat them with an ablation. This is particularly common for atrial fibrillation (AFIB or AF) and atrial flutter (a-flutter). Electrical signals that cause arrhythmias start in particular regions of the heart or the pulmonary veins that bring oxygen-rich blood to the heart. In an arrhythmia ablation, the doctor accesses the heart using a catheter and destroys tissue in specific locations. The ablation creates scar tissue that can block the arrhythmia-causing electrical signals. There are two main techniques: radiofrequency ablation (RFA) causes scarring by using low voltage, high-frequency electricity. Cryoablation uses extreme cold to cause scarring. For more info, please visit https://4hcm.org/catheter-ablation-for-arrhythmias/.
Another type of ablation, pulmonary vein isolation (PVI), is a treatment for atrial fibrillation. The abnormal electrical signals that cause afib often begin in the pulmonary veins. These are the four veins that bring blood from the lungs to your left atrium. The PVI creates scar tissue around the places where the pulmonary veins connect with the heart. This limits or blocks the abnormal signals. This procedure can reduce the frequency and severity of atrial fibrillation (often called the burden of AFIB). For more info, please visit https://4hcm.org/pulmonary-vein-ablation/.
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Tales from the Heart
New Podcasts
Episode 48
Reflections of February 2022
HCM Awareness Month
Episode 49
Arrythmias/Life with Devices Part I: with Dr Martin Maron
Episode 50
Episode 51
Special Edition: Student Athlete screening as it relates to COVID and the COVID Vaccine
Episode 52
Arrythmias: Life with Devices Part II with Dr. Harry Lever
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Sometimes Change
is Good
Changes are coming to the HCM community. Announcement will be posted on social media and email on April 18th, 2022.
(Smile 😃...it's good news!)
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This Month's Highlighted HCMA Recognized
Center of Excellence:
Ascension Saint Thomas Heart – Nashville, Tennessee
Saint Thomas Heart is now in the seventh year of a dedicated hypertrophic cardiomyopathy program. Mark Zenker, MD, FAAC, FASE HCM Program Director, says, "We appreciate the support of the HCMA as we grow and serve patients throughout the southern part of the USA.
We had to suspend our HCM patient support group due to COVID-19 temporarily. Saint Thomas Heart hopes to start that back up soon by hiring a new HCM coordinator.
Saint Thomas Heart also recently added Dr. Ricardo Lugo to our electrophysiology staff. Additionally, we are finishing our participation in the Valor trial. Saint Thomas Heart is starting a cardiology fellowship program on July 1, 2022, to help further train cardiologists to appreciate the importance of hypertrophic cardiomyopathy."
Ascension Saint Thomas Heart participated in March's Bighearted Warriors tour. Some key topics covered included genetic therapy, ICDs, CHF, and mental health issues. Click here to view this excellent webinar: https://bit.ly/3IPHrYI
For more information on Ascension Saint Thomas Heart in Nashville, TN,
please visit: https://4hcm.org/saint/.
For more information on all of our HCMA Recognized Centers of Excellence, visit: https://4hcm.org/center-of-excellence/.
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Volunteer Recognition
A Huge Thank You our ACC HCM Program Patient Volunteers
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Tracy Argandona
Vi Tang
Brian Blakely
Michael Duddy
Nancy Monica
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Karen Newstrom
Megan Jones (Webb)
Marla Kennedy
Feda Briggs (Morrissey)
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18 E Main Street, Suite 202 l Denville, NJ 07834 l (973) 983-7429 l 4hcm.org
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