HCMA HOLIDAY ORNAMENTS

With the holidays right around the corner, now's the time to be thinking about what you want to get for your loved ones. A perfect way to share your love and show your support to the HCMA is this beautiful set of 3, laser-etched HCMA holiday ornaments.  

Show your support for the Bighearted HERE and we hope your Holiday Season is Merry and Bright.

Julie Russo

Volunteer Coordinator

Volunteer 

The New Year will bring some exciting new (and fun!) changes to our volunteer recognition process. We are thankful to all of our dedicated volunteers, and we want to more formally recognize each of you for your role in helping the HCMA educate, support, and spread awareness to our HCM community. Starting January 2023 will be rolling out our Volunteer GEM Awards (VGA) program. The VGA program will track the hours each volunteer dedicates throughout the year and recognizes them as they hit milestones with fun prizes and other forms of appreciation. Stay tuned as we will be sharing more details about the Volunteer GEM Awards program on our website in the near future!

To learn more about HCMA’s volunteer opportunities and get involved, click here: Get Involved



Share Your Story 

We need patient stories now more than ever! There is still so much more to do to further help educate and spread awareness about HCM. We especially need stories to support our legislative efforts to pass the HCM Act into law in every state and to pass a proclamation/resolution in every state designating HCM Awareness Day on the 4th Tuesday. If you are a patient (or the parent/guardian of a patient), and you are interested in sharing your HCM journey, you can sign up by clicking the following link: HERE  Under "Projects" choose "Share My Story Volunteer Group".

Free Online Patient Discussion Group  

Our HCMA theme for December 2022 is “Gratitude/Loss & Support”.

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 for meeting dates and times, please click the following link: Patient Discussion Groups

Legislative Advocacy

HCM Awareness Day Resolution/Proclamation: The HCMA and Bristol Myers Squibb are partnering in a legislative initiative to designate the fourth Wednesday in February as Hypertrophic Cardiomyopathy Awareness Day in every state. This proposed resolution/proclamation will support efforts to educate people about hypertrophic cardiomyopathy.

HCM Act: 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!!):  Click Here To Save Lives

To view this proposed legislation, click the following link: HMC ACT

If you would like to volunteer for our legislative advocacy group, click the following link: HERE Under "Projects" choose " Elizabeth T. McNamee LEGISLATIVE ADVOCACY VOLUNTEER GROUP".

If you have any questions about our volunteer projects, you can reach Julie Russo via email at [email protected]. We truly appreciate the many generous people who donate their time and talent to advocate for and support our community. 

Ross Hadley

Project Manager

Project Management Update

We have so many things to be thankful for at the HCMA.  Our members and partners keep our meeting schedules full, and we continue to learn and grow as an organization.  The project management side of the HCMA has been focused on creating tools and processes to support more people worldwide with HCM.  HCM does not discriminate, and we want to provide equal access to resources.  What does this mean?  

• More video content - we have learned that our videos get a lot of views.  As such, we are working with clients and partners to create more content on popular topics. 
• Mobile-friendly content - Over 50% of our website views are phone-based, especially during the morning.  Our site is being optimized to allow easy mobile access.
• Access to trials and genetics - We want people learning about HCM to have access to the latest information on trials and genetic discovery.  Earlier diagnosis is a key to management.
• Listening and documenting- We spend much time in one-on-one calls, listening to people's HCM experiences and documenting intake information. When you look at high-level, common themes emerge.

We are looking for non-obstructed people who have had an echo in the last two years to assist in an interview.  Help the HCMA and their sponsors find answers for the future: CLICK HERE

Sabrina Cuddy

Intake Coordinator

Why Practice Gratitude?

Gratitude has benefits for our mental and physical health as well as our relationships with those around us. When we’re thankful for anything positive in our lives, it leads to a shift in mindset that helps us feel better and take action to stay as healthy as possible. What can you think of that’s been good for you this month? What about this year? Who are the people in your life you appreciate? What in your life makes you feel grateful?

Being grateful can help us manage stress. It can even help keep blood pressure from rising in response to stress if we have recently felt grateful. 

Gratitude can help improve mood and stave off depression. Robert Emmons is a researcher who has studied gratitude and well-being. His research shows that happy people are more likely to take steps to stay healthy such as exercising, eating right, and seeing their doctor or dentist regularly. People who write a few things they’re grateful for in a journal every evening sleep better, and we all know how much better we feel when we have a good night’s rest!

We at the HCMA have talked a lot about resilience this year. Gratitude helps you to be more resilient when something bad happens to you, and it can give you some insulation against all the things happening in the world. Instead of focusing on what’s wrong, someone who practices gratitude can see what’s going right.

A study in Massachusetts of those with acute coronary syndrome found that patients had more improvement in health-related quality of life as well as less depression and anxiety when they showed gratitude and optimism during recovery. Now, this isn’t HCM, which we know is a chronic condition, but it also applies to us. (Millstein, Celano, Beale, et al., 2016)

People who practice gratitude regularly are more likely to act socially thoughtful and empathetic. They are more sensitive towards other people. They also feel less competitive and often have higher self-esteem. It’s one of the easiest ways to improve your satisfaction with your life. Remember, if you’re happy, you’re more fun to be around, which can benefit your social and professional life.

How to practice gratitude

• Try keeping a journal of times you feel grateful each day. 
• If someone gives you a gift this holiday season, be sure to express your thanks to them because this can strengthen your relationship, make them feel good, and make you feel good! If you didn’t want that ugly sweater, that’s ok - regift it next year (or donate it next week), but allowing yourself to feel grateful that someone cared to give you a gift is the most important thing because of the mental and emotional boost it provides. 
• Thank someone who served you in some way - genuinely saying thank you to them can make up for past customers who were rude and put a smile on both your faces.

Linda Montgomery

Client Advocate

Family and Medical Leave Act

The Family and Medical Leave Act (FMLA) is the second in our series of laws that may affect our community.  The criteria needed to qualify for benefits are also included and meant to be a reference and do not contain all of the details.  

In 1993, the Family and Medical Leave Act (FMLA) was enacted as federal law.  There may be state law on the same subject.  While Federal Law oversees State Law, it’s best practice to refer to both sets of laws.

The law was designed to help employees balance their work and family responsibilities by allowing them to take reasonable unpaid leave for certain family and medical reasons. The law seeks to accommodate the reasonable interests of employers and promote equal employment opportunities.  The employee’s group health benefits must be maintained during the leave.

All public agencies, elementary and secondary schools (public and private), and companies with 50 or more employees are required to adhere to the FMLA.  

The bullet points below state the situations that qualify for 12 weeks of unpaid, job-protected leave per year.

• For the birth and care of the newborn child of an employee;
• For the placement with the employee of a child for adoption or foster care;
• To care for an immediate family member (i.e., spouse, child, or parent) with a serious health condition; or
• To take medical leave when the employee is unable to work because of a serious health condition

To be eligible for the leave, the employee must have worked for their employer for at least 12 months, have worked for at least 1,250 hours over the past 12 months, and worked at a location where the company employs 50 or more employees within 75 miles. Whether an employee has worked the minimum 1,250 hours of service is determined according to Fair Labor Standards Act (FLSA) principles for determining compensable hours or work.

An employer may require an employee to submit proof that the leave is due to the serious health condition of the employee or the employee’s covered family member, due to the serious injury or illness of a covered service member (employee), or because of a qualifying exigency. (1)

As always, if you have any questions please contact the office at (973) 983-7429.

1.Family and Medical Leave Act

Elena Morgan

Assistant Director

THANK YOU FOR YOUR SUPPORT!!

Thank you for supporting the HCMA during GivingTuesday. Thanks to you, we raised over $5,000! YOU made it possible, and thanks to you, we are prepared to make a greater impact in the coming year. From all of us at HCMA, we thank you from the bottom of our hearts. If you missed GivingTuesday, but are able to donate, we’d love to have your support. 

Thanks to our generous donors, our HMCA Lori Fund is accepting applications for micro travel grants to HCM patients traveling to an HCMA-recognized Center of Excellence for care or HCM patients traveling to a facility for heart transplant care. You can learn more about the Lori Fund and submit your application on our website. 

Stacey Titus

Center of Excellence Coordinator

This Month's Highlighted HCMA Recognized Center of Excellence:

The University of Kansas Health System- Kansas City, KS

The HCM Team at The University of Kansas Health System has extensive training in HCM diagnosis and treatment. They have a wealth of experience from years of providing care for hundreds of patients and families. Their experienced nurse clinicians also are knowledgeable about HCM and adult congenital heart disease. They understand your concerns and are happy to answer all your questions. The University of Kansas Health System uses state-of-the-art technology for diagnosis, treatment, and research. What sets the program apart is the strength of multiple heart specialties coming together. The University of Kansas Health consists of an interventional cardiologist and an echocardiographer. Your diagnosis and treatment plan will benefit from the perspective and coordination of four specialties. 

Dr. Loren Berenbom, the HCM Program Director, and team members Dr. Jared Kvapil, Dr. Hirak Shah, Dr. Paolo Roldan, and Barbara Lee BSN are proud to be a part of the upcoming HCMA Big Hearted Warriors Unite Tour on December 8th, starting at 7 pm EST. The Big Hearted Warriors Unite is a  free virtual educational webinar. Topics to be covered at this December 8th event will include Understanding Genetics and Genetic Testing, Medical Therapy (including Mavacaten) and Advanced Heart Failure Therapies, Cardiac Imaging and why a Center of Excellence is important, and Sudden Cardiac Arrest: Risk Stratification.

Sign up here for this free educational event: SIGN UP HERE

For more information on all of our HCMA Recognized Centers of Excellence, visit: HERE

Zachary Androus

Duke Appiah

Milla Arabadjian

Mark Rothstein

Milind Desai

Martin Maron

Steve Ommen

Mark Zucker