Julie Russo • May 1, 2023
Volunteer!


Volunteers significantly contribute to the success of the Hypertrophic Cardiomyopathy
Association and our commitment to providing support, education, advocacy, and
advancement of research, understanding, and care to those with HCM. Our volunteer’s
tireless dedication gives an extra hand needed to make our communities healthcare
experiences positive. To learn more about HCMA volunteer opportunities and get
involved, click here.

HCMA Volunteer GEM Awards Program
Please remember to log your volunteer hours regularly to participate in our Volunteer
GEM Awards (VGA) program and be recognized at the end of the year with fun prizes
and other forms of appreciation. Click GEM to learn more about our HCMA Volunteer
GEM Awards Program and how you can get involved.

Share Your Story (SYS)
HCMA Theme of the Month Stories
One of HCMA’s themes for the month of May is Medical Management: what’s New,
what’s old and what works,” featuring the story of Joseph Caruso.
If you want to share your HCM story, please email  julie@4hcm.org  to schedule an
interview. Patient stories are essential to help educate and spread awareness about
HCM!

HCMA Ambassador Program
We are reviewing the applications we have received for our HCMA Ambassador
Program’s inaugural class of 2023. Selected candidates will participate in a workshop
designed to develop best practices for optimizing your social media feed to raise
awareness of HCM through storytelling on various social medial platforms. They will
learn to educate their audience using the HCMAs repository of accurate information to
ensure HCM public awareness is factual and sound. To apply to share your HCM
experience via social media as an HCMA Ambassador, click here.

Legislative Advocacy
We have some new faces at the HCMA, our Summer 2023 interns! Each of our interns
possess the education, experience, and enthusiasm needed to succeed in helping us
move forward with the introduction and passing of the Healthy Cardiac Monitoring Act in
each state.

Healthy Cardiac Monitoring Act (HCM Act)
Our interns and volunteers have been working hard to set appointments and meet with
legislators in Ohio and Connecticut. They aim to gain support and obtain a bill
number as the next step to passing the HCM Act into law in these states. You can help
us introduce the HCM Act in your state right now! It only takes a few clicks to get the
message about the HCM Act to your state legislators to help save lives. Click here to
contact your state representatives and show your support for the HCM Act (please,
share this link with others too!!)


To view the HCM Act proposed legislation, click the following link: Health Cardiac Monitoring Act – Hypertrophic Cardiomyopathy Association ( 4hcm.org )

HCM Awareness Day Resolution/Proclamation:

The HCMA and Bristol Myers Squibb have partnered for a legislative initiative to designate the fourth Wednesday in February each year as Hypertrophic Cardiomyopathy Awareness Day in every state.

These resolutions/proclamations will support our efforts to educate people about
hypertrophic cardiomyopathy.

**State by state, as we progress with these efforts, we will reach out to our
volunteers to help champion these efforts in their home state.
If you want to volunteer for our legislative advocacy group, click the link:
https://bit.ly/3DNBKJI. Under Elizabeth T. McNamee, LEGISLATIVE ADVOCACY VOLUNTEER GROUP

Free Online Patient Discussion Groups
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!
UPDATE: Our “Newly Diagnosed/New to the HCMA” online education sessions will now
be held three times monthly, at various times, for even more opportunities to join a
meeting.

To view our event calendar for meeting dates and times, please click the following link:
Patient Discussion Groups – Hypertrophic Cardiomyopathy Association ( 4hcm.org )

If you have any questions about our volunteer projects, you can reach Julie Russo via
email at  julie@4hcm.org. We truly appreciate the generous people who donate
their time and talent to advocate for and support our community.

HCMA Blog

A pregnant woman and partner make a heart with their hands over the baby.

HCM in Pregnancy

By Sabrina Cuddy • June 12, 2025
Pregnancy is a stress on the body even for healthy people. When we have a serious disease, we tend to have even more questions. Health Educator Sabrina Cuddy answers some of the most common questions about HCM and Pregnancy.
Two Caucasian women face a computer monitor. One wears casual clothes, the other a lab coat.

Decisions in HCM: My Risk Estimate was Wrong!

By Gordon Fox • June 9, 2025
In the fifth in a series. Gordon Fox, PhD. looks at the impact of risk estimates in HCM and delves into what it means if the risk estimate seems off.

Lisa's Letter - June Newsletter

By Lisa Salberg • June 9, 2025
June 2025 is upon us and with it comes a great deal of mixed emotions for me and the basis of the founding of HCMA. Origin stories how things began has become quite a topic for Disney movies and marvel comics. But today I'm going to talk about origin stories from the HCMA. The services of the HCMA are based upon lived experience from real patients seeking better care and a chance of a future. Why are bases of intake and navigation calls? They are the starting point for deeper understanding of the condition and access to care. Because on a June day in 1995 my sister, who was 36 years old at the time, was in a situation we could never have predicted. And, at that moment in time, having more knowledge and understanding of the disease could have played important roles in decision-making prior to her cardiac arrest and after. On June 6th, 2025, my sisters held a baby shower for me excited at the prospects of their new niece coming in July. June 12th 1995. My sister would have a cardiac arrest and we would wait for her to wake up. Like any family who has waited for a cardiac arrest victim to wake up or not, nothing could have prepared us for what lay ahead. June 16th, 1995 my sister was pronounced dead and in the early morning hours of June 17th her organs were procured and given to others in hope of saving their lives. On Father's Day a wake was held. The following day was her funeral. I don't think I will ever forget the look on my father's face as he stood next to his daughter's coffin on Father's Day. But I had not considered, on that day, and because my brain couldn't handle it, was that when my father was 18 years old, he stood next to his father's coffin on Father's Day, which also should have been his graduation day. On June 21st, 1953 my grandfather had died from a sudden cardiac arrest at the age of 43. 17 years ago my father also passed on June 7th, 2008. On June 16th, 1990, a few short weeks after my wedding, I thought I had a headache and that was unusual. It was actually a stroke, one of a series of strokes that came after I had received dental work without antibiotics and developed endocarditis and multiple clots formed throughout my body. June always makes me a little nervous…and it reminds me of the fraility of human life. As with any other month of the year, good things in June have happened for our family as well, including my sister and brother-in-law's wedding and her birthday. Happy anniversary, Lynn and Kevin! It was also my mother's birthday and on my mother's birthday in 1976, my life was made better by my new neighbors and lifelong best friend coming into my life. It's hard to believe it's almost 50 years ago. So on this June 2025 this month's message will not be about the places that I've been in the past month or where I'm going next month. It will be to remind you all that this community was built because of one special woman. Her name was Lori and she was my sister and she will always be at the heart of our big-hearted community. I miss you Lori! Today and always. Please take a look at our calendar of events for June and July. We have some great programs coming up including an in-person event in Seattle. I hope to see many of you there. Make some good memories this June Sincerely, Lisa
More Posts