January 2021 Pulse Newsletter

January 2022

Happy New Year to one and all!

2022 holds a great deal of promise for the HCM community! The HCMA launched its legislative advocacy efforts officially on January 4, 2022, to ensure all children are asked about cardiac risks in the “well child” exam through the Healthy Cardiac Monitoring Act (HCM Act). Over the coming months...Click here to read the full letter.

All of January: Online Discussion Groups

Browse our January Discussion Groups to find one that fits you

click here to see January's Groups

January 13th: Bighearted Warrior Tour at University of Virginia Health, Charlottesville VA

Join University of Virginia Heart Physicians as they discuss HCM Genetics, Imaging, Subcutaneous ICD, Interventional Therapy for Obstruction with Q&A’s. Click here for tour agenda and registration.

All of February: American Heart Awareness Month

Follow us on all our social media the entire month of February as the HCMA features some of our Bighearted Warrior stories with photos/videos.

February 4th-5th: 22nd Annual San Diego Heart Failure Symposium/Virtual Event (for physicians)

La Jolla, CA: The Symposium will provide a current review of the many new and emerging trends in managing patients with heart failure. Click here for more information and registration

February 23rd: HCM Awareness Day

Join us on social media for special programming and opportunities to spend the day focused on HCM education, awareness, and support. More details to come in via email later this month.

Elena Morgan

Assistant Director

The Power

of Facebook Fundraisers

As we look at our end-of-year finances, I wanted to recognize and thank everyone who donated to the HCMA in 2021. Your generous contributions allow us to continue or work and expand our reach.

I wanted to make a special note of everyone who contributed to or hosted a Facebook fundraiser for the HCMA in 2021. In just a couple of clicks, you brought in over $60,000 through Facebook donations alone. These 1100 individuals gave anywhere from $5 to $300.

Special thanks to our top 2021 Facebook donors, who each raised over $500. They are Amit Kalia, Gordon Fox, Kristie Marsden, Molly Joseph, Erin Beck Maver, Scott Westgate, Rick Eren, Terri Washburn, Ekateryna Medzyanovskaya, Tami Duerr Tarantelli, Samantha Allen Sawmiller, Jennifer Rinaldi, Ellen Hrabovsky, and Tracy Doherty.

If you are a Facebook user you can host a fundraiser in honor of your birthday, as a memorial of someone lost to HCM, or just to support the HCMA. You can learn more about Facebook fundraising here or by emailing me at elena@4hcm.org.

Thank you to all of our 2021 donors–both off and on Facebook– whose donations allow us to work towards our life-saving mission.

Stacey Titus

Center of Excellence Coordinator

Center of Excellence Update

At the close of 2021, we mailed updated materials to all HCMA Recognized Centers of Excellence. So be on the lookout for fresh new posters on display during your next visit to your COE!

This Month's Highlighted HCMA Recognized Center of Excellence:

Barnes-Jewish Hospital & Washington University Physicians - St. Louis, MO

Barnes-Jewish Hospital & Washington University Physicians are committed to advancing human health worldwide. As noted leaders in patient care, research, and education, our outstanding faculty has contributed many discoveries and innovations to science and medicine since the school's founding in 1891. The HCMA Recognized Center of Excellence team includes Richard Bach, MD -Program Director, Interventional, Sharon Cresci, MD- Genetics, Ralph Damiano, MD- Surgeon, Marye Gleva, MD- Electrophysiologist.

"Primary research interests involve interventional cardiology, with pre-clinical and clinical studies in magnetic navigation via the Stereotaxis Niobe system to facilitate coronary intervention; Hypertrophic Cardiomyopathy. For symptomatic patients with left ventricular outflow tract obstruction due to hypertrophic obstructive cardiomyopathy, a catheter-based method of non-surgical septal reduction by alcohol septal ablation can provide significant symptomatic improvement. To better understand the short and long-term benefits of transcatheter alcohol septal ablation, we are studying its effects on cardiac remodeling and coronary and myocardial physiology. In addition, via collaborative translational echocardiographic and genetic studies, we are interested in exploring the gene polymorphisms that contribute to the wide phenotypic anatomic and physiologic variability among patients and family members with hypertrophic cardiomyopathy."

Barnes-Jewish Hospital & Washington University Physicians were part of the Bighearted Warriors Unite Tour on Dec 2nd. You can watch the webinar at https://www.youtube.com/watch?v=BF5_5sE1Cmk. Some of the topics featured: Navigating HCM, Genetics & Family, Preventing Sudden Death, 2021 Update on HCM Management, Update Surgical Management of HCM, Future Therapies for HCM.

For more information on Barnes-Jewish Hospital & Washington University Physicians in St. Louis, MO, please visit https://4hcm.org/washington/.

For more information on all of our HCMA Recognized Centers of Excellence, visit https://4hcm.org/center-of-excellence/.

Ross Hadley

Project Manager

Happy

New Year!

The project management team got their gifts early as December was filled with continued partnership activity. Our partners were in a wide variety of areas including outreach and education creating new HCM educational videos for nursing providers, investigational medication trials, committee support in health equity and medical affairs, and optimizing our in-house systems for mailings to our Centers of Excellence. We have been modifying the website based on user feedback and adding new content each week in our blog and videos.

Our goal for 2022 is optimizing our resources to support more people; Simple, right? We have updated the patient intake process and will be adding an e-consent feature via DocuSign to allow the HCMA to track those members who wish to share their unique patient journey in the future to help reduce the average age of diagnosis among other things.

Giving Tuesday was a great success but remember you can donate year round and easily support the HCMA by making sure your membership is current and setting up auto-renew.

Look for new web-based learning opportunities in genetics in the near future and throughout 2022. We look forward to continuing to share information on HCM around the globe with HCMA International with local partners throughout the world.

May you find health and happiness in 2022. If you have ideas on how we can better support the HCM Community, please send your thoughts to: pm@4hcm.org

Julie Russo

Volunteer Coordinator

Volunteer!

We would like to thank all of our volunteers for their commitment to our various volunteer programs in 2021. In 2022 we will engage even more of you as new projects are on the horizon and existing projects continue to grow!

Share Your Story

Some of our Share Your Story volunteers have already hit the ground running in 2022 in preparation for February “American Heart Month.” The HCMA will feature a different HCM patient story each day throughout the month of February 2022. This will give us 28 amazing opportunities to help raise HCM Awareness and really make a difference in people’s lives! Each patient story shared will include a written story along with video and/or pictures.

In 2022, we will need even more HCM patient stories. Your stories are invaluable to our community as they could be instrumental in enhancing website content, used to educate physicians/healthcare providers, shared with our research or industry partners, shared through social media, or it could be a feature on a future podcast. We need YOU to help us help others.

If you have already volunteered to share your story, we will be in touch soon as new projects are already cued up for 2022. If you have not yet volunteered but want to share your story, you need only to sign up from our website by clicking here. Under "Projects" choose "Share My Story Volunteer Group.”

Legislative Advocacy

The Hypertrophic Cardiomyopathy Association's (HCMA) Elizabeth T. McNamee Legislative Advocacy Committee is seeking volunteers to work with us to improve efforts 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).

The HCMA launched this legislative initiative in the fall, and we have several volunteers already engaged. This effort is BIG, and we need more volunteers to pass this legislation in each state! It is not too late to join in this effort! To learn more and to view the proposed legislation, click the following link: Elizabeth T. McNamee Advocacy Committee - Hypertrophic Cardiomyopathy Association (4hcm.org)

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 January 2022 is "Setting Your HCM Plan for the Year.” 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:

Patient Discussion Groups - Hypertrophic Cardiomyopathy Association (4hcm.org)

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.

Amy Mann

HCMA Meeting Coordinator

Virtual Bighearted Warriors Unite Virtual Tour 2021 and HCM Academy

Join us for the first virtual Bighearted Warriors Unite tour of 2022! The University of Virginia is holding its Bighearted Warriors Unite Zoom Webinar on January 13th at 6pm EST. Highlights include a discussion on interventional therapy for Obstruction, the subcutaneous ICD in HCM, and more! Then in February, we head virtually to the University of Iowa for their Bighearted Event. We have 9 dates lined up with or centers of Excellence in 2022 - Don’t miss out on these free educational events! All are welcome to join any of our Bighearted Warrior events and can register online on the events page at www.4hcm.org.

Check out our new peer-to-peer educational initiative,

HCM Academy at http://www.thehcmacademy.com This innovative CME accredited program is an impactful educational opportunity for medical professionals to learn more about the diagnosis, management, and treatment HCM and is targeted to general practitioners, primary care physicians, community cardiologists, and other health care professionals that may come across patients with HCM. Between now and May our HCM Academy Educators will be offering 125 workshops which include ongoing online modules and assessments. After this initial phase which includes three regions of the U.S, we plan to expand to other areas. We are calling on our members to refer their GPs/PCPs and community cardiologists to HCM Academy, which can be done so through our website. Please help us get the word out!

Julie Olsen

Events Coordinator & Fundraising

Happy New Year, we are looking forward to more events in 2022! Do you have an idea and need a little guidance on hosting your own fundraiser to benefit the HCMA? Email me, and let's talk, JulieO@4hcm.org! I would be happy to give you the guidance you need to make it happen.

Help us continue to raise awareness by donating $1 for every year

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