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

August's Topic is Newly Diagnosed

By Sabrina Cuddy • August 1, 2025
On a background of pink

Call to ACTION! Urge Congress to Invest in Medicaid and Medicare! No Cuts to these crucial programs!

By Julie Russo • July 31, 2025
Sixty years ago, Medicaid and Medicare were established when President Lyndon B. Johnson signed the Social Security Amendments into law. The programs were a larger part of Johnson's "War on Poverty" agenda to combat inequality. Sixty years later, Medicaid and Medicare are under attack in ways that we could never have imagined. With the passage of the One Big Beautiful Bill Act (OBBBA), $1 trillion was cut from Medicaid and Medicare―the largest health care cut in U.S. history. As a result of the budget package, more than 15 million people will lose health insurance, hundreds of rural hospitals will close, and approximately 51,000 people will die preventable deaths each year. Congress voted for this harm, and Congress can fix it. We need them to invest in Medicaid and Medicare in order to undo this damage. Click here to send a message to Congress telling them to invest in these critical programs, not cut them. OBBBA is the exact opposite of the "War on Poverty." The bill was passed with brutal cuts to health care to fund more tax handouts for the very wealthy. It took from the poor to give to the rich. The unpopularity of these cuts cannot be overstated. Eighty-three percent of the American public, including three in four Republicans, has a favorable view of Medicaid. Congress must hear from us loud and clear: reverse course, undo the harm to Medicaid and Medicare, and protect health care for more than 71 million people. Join us in sending the message to Congress to invest in these critical programs, don't cut them. 1 The Truth About the One Big Beautiful Bill Act’s Cuts to Medicaid and Medicare 2 Research Memo: Projected Mortality Impacts of the Budget Reconciliation Bill 3 Medicaid keeps getting more popular as Republicans aim to cut it by $800 billion

Lisa's Letter - July Newsletter

By Lisa Salberg • July 3, 2025
Summer, greetings to all our big-hearted friends As July approaches, our focus is already on the fall and preparing for some major events, including our annual meeting coming up in October. July will also find us on the west coast in Seattle conducting a regional patient education meeting as part of our big-hearted warrior tour. We have been following the generic drug quality issue in the United States very closely and encourage you to watch the series starting with our Hill briefing in April and following with the additional webinars with our partners at Medshadow and the People's Pharmacy, and of course the ProPublica series of articles. See them all here . We are happy to have a new team member on board - we welcome Pam as our coordinator of both our All Hearts Collaborative and Hearts and Minds project. Over the next few months, you're going to be learning more about these two amazing initiatives and how we are working to provide better services for big hearts regardless of where you live, so we are meeting all of our big-hearted friends where they are. Please stay tuned for updates from these projects coming soon. We are also creating new volunteer opportunities and engagements that we hope will make it easier for you to participate in spreading the message of the importance of diagnosis, the importance of community readiness related to CPR and AED use and, of course, helping patients get to their ultimate diagnosis and getting them on the proper treatment pathways. This July I would like to recognize all of the special birthdays in my family, including HCMA Center of Excellence coordinator, Stacey Titus-brown and my daughter Rebecca Salberg. It's a milestone birthday for Becca - it’s hard to believe I have a 30-year-old child. Wishing you all a happy and healthy summer. Go build some memories!
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