A note from Lisa
Happy heart month!
It’s hard to believe it’s February already and we are about to begin our campaign of sharing the Faces of HCM all month long. Remember to check in to our social media feeds, like, share, and comment on all of your bighearted warrior siblings. We will also send out fact sheets and informative posts for you to share with your friends to help them better understand HCM. On February 25, the HCMA will celebrate HCM Awareness Day with a live event at our office and a webinar in the evening. Register now!
We’re introducing some new characters during Heart Month, loosely based upon the movie Inside Out and we’re going to talk about our emotions and the emotions involved with living and working in the HCM ecosystem. There’s a lot to be joyous about! We have new therapies targeted to us. There’s a lot to be angry about because who really wants to have HCM. We also know that many of you have experienced sadness, anxiety, curiosity, disgust, grief, and hope. And we want to validate that these are very real emotions for you, your family, and your care team.
I am incredibly proud to announce and that is a number of our staff have received new titles and new responsibilities. As the HCMA grows, so too shall our staff. Elena Morgan is now Chief Operations Officer (COO) and will assume a broader leadership role in partnership relations, fundraising, and office management. Stacey Titus-Brown was promoted to Director of Center of Excellence Development and Management. Julie Russo is Director of Legislative and Volunteer Programs, and Linda Montgomery is the Director of Client Services. Ross Hadley, who originally joined us as a Project Manager, is now our Systems Project Manager, ensuring a solid infrastructure and reliable technology to do our work. As they all take a step forward in their new roles, I am able to spend more time on developing new projects and relationships.
Please join us for events during Heart Month, including legislative briefings in multiple states, which are great opportunities to learn how to get involved in your state’s efforts to ensure that every family has an opportunity to review their family’s heart health history with their chosen providers. Together we can make a big impact to improve the quality of life for those living with undiagnosed heart disease.
We look forward to sharing so much great content with you through the month of February!
I would be remiss if I did not take a moment to acknowledge February 2 as my 9th anniversary of receiving the gift of a donor heart from Brandy’s family. We have accomplished so much in the past 9 years, none of which would have been possible without Brandy. So please remember to discuss your wishes regarding organ donation to your family, don’t leave them wondering what you would want them to do. And I make that statement from the point of view of someone who, in collaboration with our family, made the decision in 1995 to allow my sister Lori to become an organ donor. I come from the unique perspective of having both been part of a donor family and a recipient, and I am immensely grateful to the scientists and researchers who helped make my life possible, many of whom I will never know but some of whom I can thank in person.
Wishing you all a happy and Healthy Heart month!
Lisa
Upcoming Events
Online Discussion Groups
Browse our February Discussion Groups to find one that fits you.
Congratulations!
As part of an organizational restructuring to ensure the longevity of the HCMA, several of our team members have been promoted! Join us in congratulating them!
Center of Excellence Designation for Hypertrophic Cardiomyopathy Care
We are excited to share that our COE partners will be celebrating Heart Month & HCM Awareness Day with us by submitting videos that we will post on our social media channels throughout February.
If you happen to be visiting your COE this month, you might be able to create your own photo op by posing in front of one of our HCM Awareness Day banners! Like our Comms Team!
Would you like to have these banners for your own? Consider hosting an HCM Awareness Day event at your home for your nearest and dearest by purchasing a Party in a Box kit from the HCMA Store!
Director of Legislative & Volunteer Programs
The HCMA will kick off American Heart Month on February 2 at 4:30 with a Tales from the Heart, Insight Drop: News Stories & New Publications featuring Minnesota State Senator Carla Nelson, an HCM patient who underwent a myectomy at Mayo Clinic in 2023 and is sponsoring the introduction of the Children’s Cardiac Safety Act (CCSA) in Minnesota.
“Figuring out if you are at risk as early as possible is critical to avoid potential complications.”
This special episode takes place on Lisa’s 9th “heartiversary” ❤️—a powerful conversation about early detection, prevention, and protecting children and student athletes. It will be available on Facebook, LinkedIn, and YouTube.
Linda Montgomery
Director of Client Services
Patient Services: Intake Process and Newly Diagnosed Session (What’s in it for me?)
Are you new to the HCMA Community? That is a great opportunity to take advantage of the HCMA’s free Intake Process to learn more about your HCM and receive guidance on the latest treatments and science. During an Intake call we learn more about you and your specific HCM and provide guidance for your specific needs. The Intake Call is followed up by a Navigation call, where an HCM Navigation Nurse speaks to you about your personal manifestation of HCM, and any other questions you noted during you Intake call.
Click here to schedule your Intake Call
Our Newly Diagnosed session is highly recommended, and, combined with the Intake call, creates a solid knowledge base. This knowledge is beneficial when talking with your doctor, making sense of results, and making health care decisions.
Click here to register for the Newly Diagnosed session
Scroll to the bottom of the page, and you will see the calendar of events; click on the Newly Diagnosed day and time that works best for you.
Important note: the Intake Process and the Newly Diagnosed session are not only for newcomers. If you have not had an Intake Call in over a year, it’s time for you to sign up for an Updated Intake Call. Many who’ve been diagnosed for years have participated in the Newly Diagnosed session and are amazed at how much they learn in the session that they never heard before.
We were deeply honored to participate in Zion Hill’s MLK Day of Service. A massive thank you to Senior Pastor Douglas L. Williams III and the Zion Hill community for welcoming us with open arms. The energy in the room reflected the essence of MLK Day, a powerful reminder of what happens when we come together as a community.
Our discussion focused on a vital health pillar: knowing your family heart health history. Many people don’t realize that genetics can serve as a roadmap to future wellness.
By understanding the heart health of parents, siblings, and grandparents, individuals can:
- Identify potential risks early.
- Start informed conversations with their doctors.
- Take proactive steps to protect their future.
It only takes a few minutes to uncover your family’s heart health history. An easy way to do so is through our app (QR code below)
We were thrilled to see the youngest members of the Zion Hill community dive into the HCMA Heart Health Activity Books. Making heart health approachable and fun is important for children to grow up informed and engaged.
We are grateful to have spent this day honoring the legacy of Dr. King.
Members of the Newark-based Collaborative are available to speak with local community groups and houses of worship. To schedule a presentation, please contact Pam Posnock.
Sabrina Cuddy
Intake Coordinator
February is HCM Awareness Month
Here are some HCM basics you should know:
- On average, we live as long as anyone else when we take proper care of our HCM.
- HCM runs in families, so please encourage your parents, siblings, and children to be screened.
- We are more likely to get good care at a high-volume center, an HCMA Recognized Center of Excellence. The 2024 American College of Cardiology and American Heart Association guidelines for HCM agree about high-volume centers; it’s not just us!
- Most people with HCM have a few symptoms that are easily managed with medications.
- If you are a member of the HCMA Facebook Group, remember that those who seek support from the group often have more problems related to HCM. If you are newly diagnosed, you may be alarmed by what some are going through. Just know that your HCM may not be as bad as some accounts you read online.
- HCM is characterized by a thickening of the heart muscle (hypertrophy means “to thicken”). Even with minimal thickening, we can still have symptoms due to heart muscle stiffness caused by myocardial disarray, the heart muscle cells aren’t lined up normally.
Some HCM statistics
About half of adults with HCM have symptoms. You can be diagnosed with HCM at any age. It’s common to be diagnosed during the teenage years, but many are diagnosed later.
When does HCM develop?
- Almost ¾ of those with diagnosed HCM are obstructed (called HOCM).
- A quarter of people with HCM will experience atrial fibrillation, a serious arrhythmia.
- A quarter of people with HCM may need ICD therapy to protect them from sudden cardiac arrest (SCA). Risk stratification for SCA can help you and your doctors decide if you need an ICD and what kind is best for you. Traditional Transvenous ICD – Subcutaneous ICD
- Fewer than 5% of those with HCM will eventually need a heart transplant.
Update from Kardiomyopatis Svenska Sällskap (HCMSS), Swedish HCM Society
The last few months we have been busy in the Hypertrofisk Kardiomyopatis Svenska Sällskap (HCMSS), our partner who prepared several activities! In early October, they organized a successful annual meeting, and for the second year in a row, managed to make it a physical meeting. Both the board members and members in the association are from all over Sweden, which makes it very valuable to be able to meet and connect in real life.
During the annual meeting, the team was also happy to welcome Med. Dr Peter Magnusson, one of the few HCM experts in Sweden, gave a lecture that was greatly appreciated.
Also in October, the HCM Society attended the first-ever scientific conference in Sweden on hypertrophic cardiomyopathy: Cardiomyopathies 2025: New insights, new possibilities. Another sign that many exciting things are happening in the HCM space!
In December, they were invited to participate in two exciting events: a webinar organized by the main medical magazine for physicians, at which both national and international HCM experts presented. Secondly, the extended patient council of the Swedish government. The patient council has an advisory function to the government on health care issues.
The board of the Swedish HCM Society is very much looking forward to the continuation of their fourth year of operations, aiming to increase knowledge and awareness of HCM, contribute to better health care for HCM patients, and support HCM patients and their families on their journey.
If you or someone you know is in Sweden and interested in the organization and the support they provide, visit their website by clicking here or engage in their private Facebook group by clicking here.
That’s all for now…
but stay tuned for more!
