February 2022
Happy Heart Month to one and all!
Each year we take one month to focus on America’s heart health – February is here! We have designated the last Wednesday of the month as HCM DAY! This year it will be February 23, and the HCMA will have...Click here to read the full letter.
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All of February: Online Discussion Groups
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Browse our February Discussion Groups to find one that fits you
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All of February: American Heart Awareness Month
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February 10th: Bighearted Warrior Tour at University of Iowa Health, Iowa City, IA
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Join the doctors from the University of Iowa Health with discussions on the importance of high volume imaging facilities, Electrophysiology/ ICDs, Myectomy vs Alcohol Septal Ablation, Interpreting genetic testing results, new developments in HCM with Q&A's.
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February 23rd: HCM Awareness Day
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Join us on all of our social media for special programming and opportunities to spend the day focused on HCM education, awareness, and support. |
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March 10th: Bighearted Warrior Tour at Ascension St Thomas, Nashville, TN
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Join the doctors at Ascension St Thomas: Can We Cure HCM, Your Dr says you need an ICD, HCM & CHF, Coping with HCM with Q&A's.
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Elena Morgan
Assistant Director
New Travel Grant for HCM Care
In honor of HCMA Founder/CEO Lisa Salberg’s sister Lori Flanigan-Munson, the HCMA has started fundraising for a new travel grant program called the HCMA Lori Fund.
As many of you already know, we recommend care at HCMA Recognized Centers of Excellence Programs. These Centers of Excellence (COE) are recognized for their expertise, volume of care, quality of research, patient communication, physician education, and more. But with COEs in only 24 states, we recognize that transportation to a COE can be a burden, including a significant expense.
As such, the HCMA has begun fundraising for travel grants to patients traveling to HCM Centers of Excellence or to other hospitals for heart transplant care. We plan to assist with the costs of air transportation, ground transportation, and accommodations. Once we have raised $5,000 for this program, we will begin accepting applications and distributing funds.
If you’d like to help us reach our goal, you can donate online or create a Facebook fundraiser. You can learn more about Facebook fundraising here or by emailing me at elena@4hcm.org. If you create a Facebook fundraising page, please email me to ensure we earmark your funds for the HCMA Lori Fund.
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Ross Hadley
Project Manager
So many good things are happening in the HCM world for patients and the HCMA.
Many of the programs that our project management team is working on currently are in development and will be discussed on February 23rd, HCM Awareness Day. One of the things we can talk about is the systematic review of our website. We now have several months of feedback, lots of new content, and partners and design ideas to make access to information more simple. You may have noticed the addition of a fundraiser on the front page of the website in memory of Lori Flanigan-Munson: HCMA Lori Fund.
This fundraiser will support microgrants to patients who have transportation challenges to obtain care. Please give generously as once we reach the $5,000 goal we will begin to accept applications.
Our international reach with the website expands each month and we have had over 3,000 unique views in January from 79 countries. The US, Canada, UK, India, and Australia continue to be our countries with the most active users.
Other assets that the HCMA that continue to draw significant traffic from users wanting to learn more about HCM are:
As we move forward with design changes and content additions, If you have any feedback on the website please send it to pm@4hcm.org.
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Helping the world,
one heart at a time.
Thank you!
Thank you to Lisa Salberg and HCMA for a very informative and comprehensive session for the newly diagnosed.
I live in India where I can’t access the COE but our health care system is very good and we have excellent doctors. But like in other places HCM is not very common and cardiologists do not take time to understand your symptoms and treat you specifically for the problem.
Today’s session gave me a better understanding of my problem and it is good to be part of a community that doesn’t think you are being dramatic and exaggerating your symptoms!
Regards, Jenny
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Julie Russo
Volunteer Coordinator
Volunteer!
What a wonderful start to 2022! We engaged over 50 volunteers for various projects and committees in the month of January alone. We look forward to working with even more of you as new projects are on the horizon and existing projects continue to grow!
Share Your Story
Our HCM Awareness Month, taking place during February 2022 “American Heart Month”, will feature a different HCM patient story each day throughout the month. We’ve been collecting stories, pictures, videos, and more from a diverse group of volunteers to provide a good representation of our HCM community. This will give us 28 amazing opportunities to help raise HCM Awareness through social media outreach efforts and really make a difference in people’s lives!
We are always looking for 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 featured 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! 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
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 February 2022 is “HCM Awareness, Sharing Stories of Life with HCM”. 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 here.
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
What is the difference between a Heart Attack and a Cardiac Arrest?
Sudden cardiac arrest is more common among people with HCM than in the general population. Heart attack, or myocardial infarction, is more common among people with coronary artery disease (CAD) than the general population. (Sometimes the EKG/ECG of a person with HCM can indicate possible past MI - this is because of scar tissue in the heart which can be from HCM, not from a heart attack) It is possible to have both HCM and CAD at the same time, so someone with HCM could have a heart attack.
It is important that you know the difference because the underlying cause, treatment, family implications, and lifestyle changes are very different! Knowing the symptoms of each could save a life.
During a heart attack, the blood flow to the heart muscle is either reduced or completely stops. This typically happens because an artery is blocked. When the heart muscle does not get oxygen-rich blood, it stops working.
Common symptoms of a heart attack include pain or discomfort in the chest, arm, back, neck, or jaw; trouble breathing; lightheadedness or dizziness; sweating; and nausea or vomiting. Other symptoms may include a feeling of fullness in the chest; pain in the abdomen; heartburn; loss of consciousness; pale skin; anxiety; and unusual tiredness.
Not everyone who has a heart attack has the same symptoms. Often, we tend to ignore a heart attack thinking it may just be abdominal discomfort due to gas pains or indigestion. If you have more than a few of the symptoms listed above, then you are likely to be having a heart attack. Get emergency help immediately by calling 911 or your local emergency number - do not try to drive yourself to the hospital! While you wait for an ambulance, crush an aspirin, dissolve it into a glass of water and drink it. You can also just chew the aspirin.
During a cardiac arrest, the heart suddenly stops. This is due to an electrical disturbance that interferes with the heart’s pumping function, stopping blood flow to the rest of the body. More specifically - the heart first goes into a rapid beat which then becomes chaotic and changes from “beating” to “fibrillating” this means no blood is pumping out of the ventricle, and thereby no blood is moving through the body. Without oxygen being delivered to the body, the brain begins to shut down and life is no longer sustained.
Symptoms of a cardiac arrest: extreme dizziness, fainting, not responding.
In the case of a cardiac arrest, call emergency services, start CPR, and use an AED (automated external defibrillator) if available.
Think of a house - you have electrical wiring and you have plumbing. Your heart also has electrical and plumbing. A heart attack is caused by the plumbing (blood vessels) becoming blocked by something, usually cholesterol plaque. A cardiac arrest is caused by chaotic electrical impulses that create arrhythmias which can become life-threatening.
A Heart Attack is clogged pipes – a Cardiac Arrest is a failure of your electrical system.
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Julie Olsen
Events Coordinator & Fundraising
Happy Heart Month! I look forward to announcing some FUNdraisers we are planning for later in the year.
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.
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Tales from the Heart
New Podcasts
Episode 42
Mike Papale: HCM Warrior, Cardiac Arrest Survivor,
Author and Advocate
Episode 42
What will 2022 bring for the HCM Community?
with Dr Martin Maron
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This Month's Highlighted HCMA Recognized
Center of Excellence:
University of Iowa Hospitals & Clinics
Program Director Ferhaan Ahmad, MD, Ph.D., says, "It has been gratifying to see the University of Iowa HCM Program become an essential resource for patients and families living with HCM in our region. We have a talented team of clinicians with expertise in HCM, including a genetic cardiologist, a clinical cardiac electrophysiologist, an interventional and structural cardiologist, an imaging cardiologist, a psychiatrist, a sleep medicine physician, a nurse practitioner, two nurses, and two genetic counselors. We are looking at ways to expand our clinic further to meet the growing need for comprehensive HCM care in the Midwest and all over the United States. On the scientific side, we are participating in clinical trials of new HCM drugs in patients, and we are studying genetically engineered mice and pigs with HCM.”
“We have had an incredibly productive collaboration with the HCMA over the years. We are proud to work on educational activities with the HCMA, such as the Bighearted Warriors Unite, on February 10, 2022. Our experts will be discussing cardiac imaging, defibrillators, genetic testing, and new and emerging medical therapies for HCM."
For more information on University of Iowa Hospitals & Clinics in Iowa City, IA, please visit: https://4hcm.org/uiowa/
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Volunteer Recognition
A Huge Thank You to all who Shared Their Story
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Anna Jeffries
Ashley Fisher
Ben Werchowsky
Bruce Bishop
Charles & Nannette Roberts
Cole Mitchell
Deborah Capiro
Deric Wormley
Hugo Campos
Jasmine Morton
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Jill Armstead
Joseph Caruso
Karen Newstrom
Kelly Sidebottom
Kent Sperry
Lekeshia Henderson
Lynda Neuhausen
Marla Kennedy
Marsha Rosenberg
Michael Duddy
Mike Papale
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Nadia Morgan
Priscilla Williams
Rise Mosher
Rush Roberts
Samuel Morris
Scott Popjes
Theresa Argandona
Thomas Forsyth
Vi Tang
William Rossi
Willie McLaughlin
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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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