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Greetings to all of our big-hearted friends,
The year is speeding by, and we are entering the "busy season" here at the HCMA. Our annual membership drive mailing will be sent out later this month. Please keep an eye on your mailboxes. September is our opportunity to review our accomplishments over the past 12 months and see how much we've grown.
In every measurable factor, the organization has grown. As we grow, we find new ways to serve the community effectively. We are super excited about our new social media ambassador program. The inaugural class was launched and social media content is being shared to show the true face of HCM in daily life. We are excited to embark on several clinical trial endeavors and market research to assist new industry partners in understanding our community's needs, hopes, and dreams.
October is a hectic month at the HCMA as it is our first in-person annual meeting since 2016. Our last meeting was in Boston while I was listed for my transplant. Our intention was to come back with an in-person meeting in 2020; we all know how that went… But now the world is in a much different place. We are prepared to host an extraordinary day of education, advocacy, support, and an opportunity for the entire community in our shared mission to improve the lives of those with HCM. For full agenda and registration information, click here.
I was excited to attend the European Society of Cardiology meeting in Amsterdam last month. I was pleasantly surprised by the new guideline's inclusion of the role of myosin inhibitors in hypertrophic cardiomyopathy. The drug has yet to be priced and is not fully available in Europe, so it may be some time before patients have complete access. While American and Canadian patients have access now, some barriers must be navigated in some circumstances. HCMA and our partners will be working to ensure access is seamless.
Lastly, we congratulate HCMA staff member Stacey Titus on her wedding on September 3. We must get used to a new name soon – Welcome Stacey Brown!
We look forward to seeing many of you in October!
Best wishes to all.
Lisa Salberg
CEO and Founder HCMA
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October 21st: Annual Patient Meeting & Unmask the Great Masquerader Ball | Join us for a day full of education, advocacy and so much more. Register Here | | |
Sep 14: In Person Meet and Greet Opportunity Baltimore Maryland | 7:00-9:00pm EST: If you happen to be in Baltimore, MA on Thursday, September 14th, Lisa Salberg, CEO and Founder of the Hypertrophic Cardiomyopathy Association (HCMA), will be hosting a "Meet and Greet" at Residence Inn Baltimore at The Johns Hopkins. Click Here! | | |
Sep 20th: Special Edition Bighearted Myosin Inhibitor | 6:30 pm EST: Join us for a Special Edition Bighearted Warriors Tour about Myosin Inhibitor, Click Here! | | |
Julie Russo
Volunteer Coordinator
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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. The tireless dedication of our volunteers gives us the extra hand needed to make our community's healthcare experiences positive. | | | |
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Ross Hadley
Project Manager
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HCMA Project Opportunities | September brings many opportunities for our community to learn and share our experiences with HCM through trials, focus groups, and survey work. You have heard us stress the importance of understanding your presentation of HCM and if you are obstructed or non-obstructed. This is the prime factor in two of our projects. | | | |
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Stacey Titus-Brown
Center of Excellence Coordinator
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COE Updates
Happy September! As summer comes to a close, the HCMA is pleased to announce two newly added COE programs. Last month, we announced the Allegheny General Hospital – HCM Program. We will announce our 2nd newly added program in the coming weeks, so please stay tuned for that exciting announcement. Additionally, we held an excellent meet and greet in Atlanta on August 17; we connected in person with members from the HCMA Community. We will host another in-person meeting and greet for the Baltimore area. If you happen to be in Baltimore, MD, on Thursday, September 14, 2023, join Lisa Salberg, CEO and Founder, and myself at Residence Inn Baltimore at The Johns Hopkins Lobby/Bar area from 7 - 9 PM ET. There is no charge to register, and a light menu and non-alcoholic beverages will be served. Space is limited, so we ask all to register by September 10 for proper headcount and ensure enough space is reserved.
To register, click HERE.
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Sabrina Cuddy
Intake Coordinator
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Septal Reduction September | When symptoms of obstruction (such as shortness of breath, exercise intolerance, light-headedness, and fainting) persist despite using medications, or if obstruction severely restricts blood flow from the heart to the body, it's time to consider septal reduction. | | | |
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Olivia Esposito
Graphic Designer
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Be a part of our Annual Meeting!
As you already know our Annual Patient Meeting and Masquerade Ball is rapidly approaching on October 21st in Morristown NJ, we hope you can join us! HERE. One of the major pieces of this day is our event book. We are now accepting entries for our tribute section. If you would like to honor a member of the HCM community (a loved one, a doctor, a nurse, a COE, or even the HCMA) please fill out this survey. And of course if you haven’t already, don’t forget to register for this great community event!
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Linda Montgomery
Intake Coordinator & Online Discussion Group Leader
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Online Discussion Groups
Thank you to all those attending our Newly Diagnosed sessions. Your participation, questions, and follow-up Intake and Navigation calls create an engaged and educated community.
Our HCM Family is growing every day. In order to reach each of you, we've been running more sessions the Newly Diagnosed course. The Newly Diagnosis session sets the groundwork for an easier transition into the world of HCM, a comfortable learning environment, and an assurance that you are not alone in this process.
We've intentionally increased the sessions for our West Coast audience. I would love to see the numbers increase for our West Coast participants.
We will continue offering more sessions at a wider range of times for a few months. We will see what the data tells us about what works best. If you have any questions, comments, or suggestions about the Newly Diagnosis sessions please call the office (973) 983-7429 or email me at [email protected].
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Julie Olsen
Events Coordinator
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Unmask HCM Annual Meeting and Unmask the Great Masquerader Ball | |
You are invited to join us on Saturday, October 21st at the Hyatt Regency in Morristown , NJ for the return of the annual meeting. It is with great pleasure that we are able to host this in-person full day event again.
One of the many events that will take place at our Masquerade Ball is our silent auction. We have set up a Wish List through Amazon for donations with great items, such as an airfryer, a pizza oven, various gift cards, and a lot more. If you would like to see these prizes at the event make sure to donate. All proceeds raised will go toward the HCMA Lori Fund.
As always, make sure to register! We can’t wait to see you there!
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"There has been a recent explosion of exciting new advances in the evaluation and management of hypertrophic cardiomyopathy. To learn the latest information on HCM from the established experts come join us at the annual HCMA meeting. No better opportunity to expand your knowledge or just learn the basics than at this incredible educational event focused on HCM."
-Dr. Martin Maron, Lahey Hosptial and Medical Center
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Highlighted Volunteers for September 2023
Health Equity Committee Black/African American Work Group Members
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Avonne White
Benjamin Lee
Deatrah DuBose
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Milla Arabadjian
Brian Blakely
Christina Tymony
Gregory McClees
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66 Ford Road, Suite 213B l Denville, NJ 07834 l (973) 983-7429 l 4hcm.org
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