Happy May!
The weather is finally warming up across the USA, and exciting news is spreading about the recent FDA approval of mavacamten, now Camzyos™ by Bristol Myer Squibb. This news has dominated the HCM community over the past several weeks. You can learn more about the availability of this first-in-class myosin inhibitor for the treatment...Click here to read the full letter.
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May 6th National Nurses Day |
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All of May: Online Discussion Groups
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Browse our May Discussion Groups to find one that fits you
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May 12th: Bighearted Warrior Tour; AdventHealth, Orlando, FL
6:00pm EST: Our next tour stop is at AdventHealth in Orlando FL where we will discuss clinical presentations of CHF in HCM, Atrial Fibrillation Ablation, Septal Myectomy or Not, and Heart Transplant Pathway with Q&A. Click here for agenda and registration.
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June 3rd: OPEN HOUSE: Meet and greet at the new HCM Clinic at Lahey Hospital
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11:00am EST: Join Lisa Salberg and the team of the new Lahey Hospital & Medical Center Hypertrophic Cardiomyopathy (HCM) medical and surgical center. Click here for registration.
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June 9th: Special Edition! Bighearted Warrior Tour Pediatric and Adolescent HCM (Multi-center)
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6:00pm EST: Join us for our Pediatric & Adolescent HCM Bighearted Warrior Tour with Keynote Speaker Jeffrey Towbin, MD from Le Bonheur Children’s Hospital. Click here for agenda and registration.
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June 9th: 5th Annual Cardiovascular Health Policy Summit, Washington DC
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9:00am-2:00pm EST: Lisa will be speaking at this live event along with discussions on these topics: Peripheral artery disease in America, Non-medical switching in cardiovascular disease, Utilization management in high-risk populations and Hypertrophic cardiomyopathy.
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Amy Mann
HCMA Meeting Coordinator
Virtual Bighearted Warrior Tour 2022
Happy May and welcome to a new era in the treatment for HCM with obstruction with the launch of Camzyos!
Join us for our next patient education virtual Bighearted Warriors Unite Tour Webinar at Advent Health, Orlando FL on May 12th at 6 pm EST. Highlights include Different presentations of Heart Failure in Patients with HCM, What Leads Patients to Require Atrial Fibrillation Ablation in HCM, HCM Heart Transplant Pathway, and more. Plus, we have a Special Edition Bighearted Webinar on Pediatric and Adolescent HCM at 6 pm EST on June 9th, which will feature expert faculty from multiple Centers. The agenda will be released soon, so keep an eye out. We have many more Bighearted Webinars including Special Edition ones to be delivered this year. 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.
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, PCPs, community cardiologists, and other healthcare professionals that may come across patients with HCM, 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/. We plan to expand this program so that all of our Centers of Excellence have educators to improve care in their communities. If you would like a digital flyer to send to your health care provider (PCP, Internist, NP, Community Cardiologist) please contact me at amy@4hcm.org.
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Ross Hadley
Project Manager
Clinical Trial Update
There have been many projects coming to fruition these past weeks but we need your help to spring ahead!
The FDA approval of CamzyosTM was very exciting, and we thank all of those involved in creating a new tool for the treatment of HCM. If you would like to learn more, be sure to visit our website. New drugs cannot make their way to market without trial participants, and we need to recruit a few more members!
Active trials:
1. A Celltrion study is taking place at NYU. If you have HOCM and have access to NYU, please take the survey and help the HCMA and Celltrion as they work to bring new solutions to our community. This trial is ending soon, and we need three more participants - we are a small but mighty community. Please help us with our research goal.
2. The Imbria study for the Non-Obstructed has sites all across the US. If you are non-obstructed, this is a great opportunity to help researchers understand this less common presentation. You can learn more and complete the survey here. Imbria has many centers within our COE community - please take the time to complete the survey and learn more.
Thank you for participating in these surveys and assisting in moving HCM research forward - if you had completed a survey in the past but have not heard back, please try again. We had many respondents who did not provide their contact information, and the tool does not identify you - you must provide your contact information!
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Elena Morgan
Assistant Director
Medical Affairs Committee Inaugural Meeting
The HCMA held the first meeting of our Medical Affairs Committee on Thursday, April 21. We are so thankful for the time of this group of talented and experienced HCM experts. The role of the Medical Affairs Committee is to maintain the scientific and clinical accuracy or medical information regarding the standard of care for HCM that is relied upon in all functions and operations of the HCMA, its programs, its publications, and communications, and its representation to HCM patients, family members, caregivers, healthcare providers, and the public. The committee will also organize and maintain a list of areas of interest for investigation, generate research opportunities, and also review research opportunities and requests from outside sources. The HCMA Medical Affairs Committee includes:
Zachary T. Androus, PhD
Duke Appiah, PhD, MPH
Milla Arabadjian, NP, PhD
Milind Desai, MD
Carlton Hournung, PhD
Martin Maron, MD
Gwen Mayes, JD, MMSc
Steve Ommen, MD
Mark Rothstein, JD
Lisa Salberg
Mark Zucker, MD, JD
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Julie Russo
Volunteer Coordinator
Share Your Story
We are looking for HCM stories from patients in every state as we move forward with our legislative initiative to find the undiagnosed. We are currently seeking HCM patient stories from: CA, IL, MD, MA, MI, NJ, NY, OH, PA, TX, UT, VA, and WA. If you live in one of these states and would like to share your story, please contact our volunteer coordinator, Julie Russo, via email at julie@4hcm.org.
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
Our April 2022 call block events were a lot of fun and a great success! Our volunteers contacted over 200 Assembly persons and Senators in New York. Thanks to their efforts, we have already met with quite a few of these representatives and have many more appointments set. The feedback from the legislators we have met about the “Healthy Cardiac Monitoring Act” has been extremely positive. We’ve also learned a few things along the way from our New York legislators that will assist us as we move forward from state to state. Thank you so much to our volunteers! We will be setting up additional call blocks in the month of May, so stay tuned if you would like to join in this rewarding effort of saving the lives of children (and their families!).
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".
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 May 2022 is “Medical Management - Managing symptoms and medication side effects”. 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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AMA offers free HCM education webinars
Our Partners at AHA are offering some amazing HCM education with some of our favorite HCMA Recognized Center of Excellence partners.
May 5th, 2022 @ 11am CT:
Choose from a variety of on-demand FREE webinars on HCM topics:
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Sabrina Cuddy
Intake Coordinator
HCM Medical Management
May is all about medical management here at the HCMA. Medical management means using medications and other non-invasive therapies to treat disease and provide relief of symptoms. We are excited that there are new treatments for HCM being studied, and one, CamzyosTM (mavacamten), has just been approved by the FDA! It is a historic event for treatments to be targeted for HCM.
HCM can cause various symptoms depending on how stiff the heart is, how much scarring there is, and whether there is obstruction. Some people have no symptoms or at least none that they notice. Symptoms of HCM may include chest pain/pressure, shortness of breath, lightheadedness, fatigue, palpitations, syncope (fainting)/near-syncope, and brain fog. Medications are the first-line treatment for symptoms of HCM. Here are some medications used to treat HCM and what they are used for:
NEW! Myosin Inhibitors - medications that cause the heart to beat with less force. They may also reduce obstruction in some patients. Camzyos (mavacamten) will be available for patients soon! For more information, click here: https://4hcm.org/about-camzyos/.
Antiarrhythmics - used to try to restore normal rhythm in the heart.
Antibiotics - to treat or prevent bacterial infections. In HCM, they may be given before dental work to prevent infective endocarditis.
Beta-Blockers - make your heart beat slower with less force, allowing the heart to fill more completely. They can lower blood pressure and relieve symptoms like chest pain, breathlessness, and palpitations.
Blood Thinners - anticoagulants make it harder for blood to clot. Prescribed to reduce the risk of stroke, which is higher in patients with afib, aflutter, and artificial heart valves.
Calcium Channel Blockers - are used to lower blood pressure and slow the heart rate. May reduce symptoms from obstruction in HCM.
Diuretics - “water pills” used to help the kidneys get rid of extra water and salt, reducing swelling in the body.
Sodium Channel Blockers - may be used to reduce gradient in obstructive HCM or treat chest pain.
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Tales from the Heart
New Podcasts
Episode 53
The role in patient advocacy for uncommon disorders with Dr. Turer
Episode 54
Communicating about Genetics/Family History in HCM with Dr. Steve Ommen
Episode 55
SPECIAL EDITION: CamziosTM is here with Dr Milind Desia
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Sock Fundraiser
You'll be styling in our cool HCMA heart themed socks!
Choose from 9 designs and 35% of sales will go to
the HCMA ($14.99 a pair).
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This Month's Highlighted HCMA Recognized
Center of Excellence:
AdventHealth Cardiovascular Institute – Orlando, FL
AdventHealth Orlando is recognized as an HCM Center of Excellence with HCMA for our commitment to providing expert treatment to patients with Hypertrophic Cardiomyopathy. Led by Director Dr. Marcos S. Hazday, our HCM program provides whole-person cardiac care for patients who are considered end-stage through optimized management and ground-breaking medical therapies capable of delaying the need for transplant.
Dr. Hazday's background in Electrophysiology and interest in structural heart and congestive heart failure, paired with his participation in sudden cardiac death trials, created the foundation of a program with unique features, including advanced heart failure and transplant with the AdventHealth Transplant Institute.
Our Team:
Dr. Marcos S. Hazday, Director of HCM Center of Excellence
Dr. Kevin Accola, Cardiothoracic Surgeon
Dr. George Monir, Electrophysiologist
Dr. Rajesh Shah, Interventional Cardiologist
Dr. Phillip Anderson, Interventional Cardiologist
Dr. Milind Parikh, Electrophysiologist
Dr. Askan Ghaneie, Radiologist
Dr. Robert Groves, Radiologist
Dr. Patricia Guerrero, Electrophysiologist
Dr. Majed Dasouki, Genetics
Dr. Jorge Garcia, Clinical Pediatric Cardiologist
Dr. Bhavya Trivedi, Pediatric Electrophysiologist
AdventHealth Orlando and the AdventHealth Cardiovascular Institute, in partnership with Central Florida Cardiology Group, AdventHealth is the only HCMA Recognized Center of Excellence program in Central Florida, serving nearly 500 families over the last 12 years.
"We are proud that we continue to be recognized as an HCM Center of Excellence with HCMA. At AdventHealth, we believe that early treatment and diagnosis paired with a collaborative care team of leading cardiology experts is critical to best manage symptoms, especially in patients at high risk for serious cardiovascular complications. Our goal is to make sure our patients are cared for and that their medical needs are addressed while feeling connected and whole throughout their entire journey at AdventHealth."
Dr. Marcos S. Hazday,
Director of AdventHealth Orlando HCMA Recognized Center of Excellence
AdventHealth Orlando will be participating in May's Bighearted Warriors Unite Tour. Some key topics that will be covered are Different Clinical presentations of CHF in HCM, Atrial Fibrillation Ablation, Septal Myectomy, Transplant Pathway, and more! Please click here to register for the May 12th event
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Grant Review
Nancy Monica
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Legislative Advocacy Volunteers Call Blocks
Domenick Vita
Rosemary Conlon
Elizabeth Wessman
Debra Rafson
Lisa Vecchione
Al DuBruck
Patricia Szendrey
Laurie Williams
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Legislative Advocacy New Committee Members
William Rossi
Judith Zerden
Scott Barrocas
Rosemary Conlon
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HCMA's LinkedIn Group Connects HCM Advocates and Professionals from Over 90 Nations
By Richard Melia
Established in June, 2009, the HCMA LinkedIn Group https://www.linkedin.com/groups/2037509/ is a rapidly growing listed group. Individuals who are members of LinkedIn may apply to join the group. After a review of their application by a Group Manager designated by the HCMA, new members will have access to a wide range of information. Posts include notices about podcasts and meetings, scientific and health advances, the HCM Academy, activities of HCMA partner organizations (eg. the American Heart Association; Women's Heart; the American College of Cardiology); HCM Centers of Excellence, and updates from all over the world.
As of the end of April 2022, the HCMA LinkedIn group has over 2600 members from over 90 nations. The ten countries with the largest number of members are the USA, India, United Kingdom, Italy, Saudi Arabia, Australia, Egypt, Argentina, Iran, and Canada. Group members have a wide range of backgrounds and interests related to HCM including patients who have been diagnosed with HCM or have a family member with HCM; cardiologists, echocardiography and imaging specialists; genetics counselors; researchers; writers and translators; public health and epidemiology specialists; patient advocates; professors and teachers; and fitness/exercise/rehabilitation specialists.
The HCMA website lists several options including Facebook for helping people learn about HCM, share their personal stories, and connect with others on issues related to HCM. Those are valuable tools and may be the best social media tool for many HCMA members. However, people often turn to LinkedIn for specialized reasons.
LinkedIn has a unique and well-established mission related to employment and information sharing activities. It has an extensive reputation for helping individuals expand professional contacts, broaden their knowledge in specific areas of interest to them, and help them connect with others with similar interests throughout their careers and/or in pursuit of activities that are most meaningful to them. If you are a LinkedIn member interested in learning more about the HCMA LinkedIn group, consider making a request to join the group. If you are already an HCMA LinkedIn group member, consider inviting some of your LinkedIn contacts to join the group.
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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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