PATIENT DISCUSSION GROUPS

The HCMA introduced online patient discussion groups in January 2021 to give members of our community easy access to peer support resources, right from the comfort of their own home!

Our discussion groups are designed to share, inform and support individuals living with HCM. Group meetings take place on a zoom platform and are hosted by our volunteer discussion group leaders who have completed training courses conducted by the HCMA.

Each group leader has their own personal approach to assure an environment where participants can share, while also learning a growing from the collective experiences of others. You can find our discussion group leaders' bios and read about some of their own personal HCM journeys by clicking on the individual leader name/photo below.

Online discussion group meetings are recurring, with each host leading a meeting every month. Participants must register for each meeting as they are limited to 25 participants per meeting. Register for one, or multiple meetings by clicking the meeting links on our event calendar.

New meeting dates, times, and topics are continually added to our event calendar, so check back regularly to find a group meeting best suited for you! If you are interested in hosting your own discussion group or have any ideas for additional meeting topics not already offered, please contact Volunteer Coordinator, Julie Russo at julie@4hcm.org.

Online Discussion Groups with several group meeting opportunities each month

Registration is required and each discussion group meeting is limited to 25 participants.

SYDELLE ZINN

Meet online discussion group host, Sydelle Zinn. Sydelle co-hosts a monthly “ICD” Discussion Group. Click on our event calendar for exact dates and times to register for Sydelle’s online discussion groups. Our free online discussion groups are open to all.

More about Sydelle - Click Here

My name is Sydelle Zinn. I was diagnosed with HCM at 53, after I became lightheaded on a trip to the zoo. My cardiologist made HCM real to me; no alcohol and no caffeine! I received a septal myectomy in June 2010. I live in Cleveland with my husband, who is a professor, and our daughter. I used to work at the National Institutes of Health, and currently volunteer in Cleveland's Jewish community. For years, HCMA has helped me navigate HCM. As a discussion group leader, I hope to reassure people new to HCM that we can live with this disease.

Dawn Levitt

Meet online discussion group host, Dawn Levitt. Dawn co-hosts our "Pre-transplant" monthly discussion group with Lisa Vecchione.

Click on our event calendar for exact dates and times to register for this online discussion group. Our free online discussion groups are open to all.

More about Dawn - Click Here

Dawn was diagnosed with HCM when she was seven years old, and she received her first heart transplant shortly after her thirty-eighth birthday. Almost thirteen years later, she received her second heart transplant. After the last transplant, she retired from the corporate world and is currently self-employed as a freelance writer. Among her writing endeavors, she maintains a blog which discusses various aspects of transplant life as well as featuring pictures of her dogs. Dawn currently lives in the suburbs of Detroit with her husband and two adorable little terriers. You can find her blog at www.dawnlevittauthor.com

LISA SALBERG

Lisa is HCMA's Founder and CEO. She created and has hosted many of our HCMA online discussion and education groups since the program's inception and is always ready to support our leaders. She will occasionally join a group as a guest speaker or even just "pop in" to say hello. Our free online discussion groups are open to all.

More About Lisa - Click Here

I was diagnosed at 12yrs old (knowing the family history of HCM with the loss of my grandfather in 1953).

Tragedy struck with the loss of my sister at age 36 in 1995. She was diagnosed with HCM but was mismanaged. This was on the forefront of my mind constantly and preempted me
to create the non-profit HCMA in 1996 to advocate for HCM awareness, education, resources, research, and support.

We have helped thousands of HCM patients in the United States and the association continues to grow each year, including recent international outreach as well.

GWEN mAYES

Meet online discussion group host, Gwen Mayes. Gwen hosts a monthly “Emotional Support” Discussion Group called "Talk it Out" --- heartfelt strategies to communicate with the important folks in your life about what it's like living with HCM and how it affects your relationship with them. Click on our event calendar for exact dates and times to register for Gwen’s online discussion group. Our free online discussion groups are open to all.

More about Gwen - Click Here

During the discussion, we will focus on one group -- partners, spouses, children, friends, etc. -- and talk through what we want to say and practice saying it out loud. We will encourage others to speak their truth and find the right words to say what needs to be said. As patients, we want to be heard and seen by those who matter most.

Greetings! I'm in my mid-60s, and have had symptoms of HCM since childhood, diagnosed in my 20s, and have done well with medication and lifestyle changes. I'm followed at two COEs and by a local cardiologist. For me, the frightening arrhythmias and emotional toll have been the most difficult to manage. As a discussion group leader, I will focus on self-awareness and stress management. During my career, I was a physician assistant, lawyer, and spent 30 years as a health policy leader in Washington, DC. Today I'm a consultant and life coach, live on the Chesapeake Bay in Annapolis, Maryland, and sail, write, paint, and enjoy entertaining.

Debra Rafson

Meet online discussion group host, Debra Rafson. Debra hosts a monthly “Life with HCM” Discussion Group.

Click on our event calendar for exact dates and times to register for Debra’s online discussion groups. Our free online discussion groups are open to all.

More about Debra - Click Here

Debra Rafson was diagnosed with HCM in 2011 at age 32, after a lifetime of red flags and unexplained symptoms. The following year, she made her way to an HCMA-recognized Center of Excellence for the first time, where she found the care team she needed. In October 2016, she had a septal myectomy, mitral valve adjustment, and ICD implant at Tufts Medical Center in Boston. She currently resides in South Florida. By trade, Debra is an arts administrator, having worked as a theatrical stage manager and managing director. She hopes to transition to more work in writing and helping people with chronic illness navigate their medical journeys. Debra is one of the original HCMA Online Discussion Group Leaders, beginning in late 2020, and loves meeting other people with this disease and sharing our stories of “Life with HCM.”

Karen Klimczak

Meet online discussion group host, Karen Klimczak. Karen co-hosts our "Transplant Pathway" monthly discussion group along with Amy Mann. Click on our event calendar for exact dates and times to register for this online discussion group. Our free online discussion groups are open to all.

More about Karen - Click Here

I was diagnosed with HCM at 27 years old, with no family history and years of passing out/concussions (early 20s) during physical activity. Having grown up super active: playing tennis, hiking and weightlifting, HCM wasn’t easy to understand or diagnose.
With the incredible support of the HCMA and an amazing healthcare team/Center of Excellence, I received an ICD and learned that ventricular arrhythmias from HCM were causing these episodes. Having survived many life-saving ICD shocks and proactive care, I’ve been living fully- having a career as a Registered Dietitian, lots of travel, enjoying a wonderful marriage and becoming a mom to a fascinating daughter (now 6).
I am incredibly grateful to have received a life-giving heart transplant on NYE 2020. As a support group co-leader, I hope to support others along their transplant journey and life’s path. It is all possible because of great support (a huge village) and taking it one moment at a time.

PAUL PERLMAN

Meet online discussion group host, Paul
Perlman. Paul co-hosts a monthly “All Things
Myectomy” Discussion Group. Click on our event calendar for exact dates and times to register for Paul’s online discussion group. Our free online discussion groups are open to all.

More about Paul - Click Here

I am Paul Perlman, a retired lawyer from Orchard Park, NY. I was diagnosed with HCM in 2013 at the Cleveland Clinic, and received an ICD later that year. After my symptoms became more pronounced over the next three years, I had a surgical myectomy in 2016.
Since retiring in 2017, I have taught at a local college, and served on my college's Foundation Board. For 25 years before I was diagnosed, I was a general aviation pilot.
Being an online discussion group leader is important to me because one of the greatest sources of anxiety to people living with HCM is fear of the unknown. I believe that anxiety can be reduced by sharing our questions and experiences.

Karen Newstrom

Meet online discussion group host, Karen Newstrom. Karen co-hosts a monthly “ICD”
Discussion Group. Click on our event calendar for exact dates and times to register for Karen’s online discussion group. Our free online discussion groups are open to all.

More about Karen - Click Here

I am 64 years old, married, a mother of five and grandmother to ten. I taught for eighteen years, seventeen in kindergarten. In my retirement, I enjoy playing oboe and substitute when needed.

Two of my brothers died at age 20 and 34 from HCM. My father lived with it until 84. Two of my adult children have it, along with one grandchild, a niece and a great-nephew. I was diagnosed as an adult and received an ICD due to family history. It has fired appropriately ten times! In 2010 I had a successful myectomy.

I hope to give others encouragement on their HCM journey.

greg levalley

Meet online discussion group host, Greg LeValley. Greg co-hosts a monthly “All Things
Myectomy” Online Discussion Group. Click on our event calendar for exact dates and times to register for Greg’s online discussion groups. Our free online discussion groups are open to all.

More about Greg - Click Here

My name is Greg LeValley. I am a retired Police Sergeant and served in the United States Marine Corps. I was diagnosed with HOCM following a stroke in 2018. I have a subcutaneous ICD, had an atrial ablation for AFib and most recently a septal myectomy, Cox MAZE procedure and atrial appendage clip. I enjoy spending quality time with family and friends, golfing, fishing and being outdoors enjoying life to the fullest. I am extremely excited to be an online discussion group leader so I may help educate others with HCM and ease their minds going forward. I look forward to meeting you!

lynda neuhausen

Meet online discussion group host, Lynda Neuhausen. Lynda hosts a monthly “Emotional
Support” Discussion Group. Click on our event calendar for exact dates and times to register for Lynda’s online discussion group. Our free online discussion groups are open to all.

More about Lynda - Click Here

I live in Tampa Bay, Florida and am single mom of three, 19, 21 and 24. I experienced major heart symptoms at age 39, but not diagnosed until 46. I had 2 myectomies in 2012 and continue to struggle with symptoms. I was a retail manager for 20 years and started career as attorney just before diagnosis. I love spending time with my kids, traveling, and meditation/yoga. Learning to live with this illness has been a journey, and if I can lend and facilitate assistance and support to others on theirs, I think it can bring us all hope and courage.

trudy tynan

Meet online discussion group host, Trudy Tynan. Trudy hosts a monthly “HCM Symptoms” Discussion Group. Click on our event calendar for exact dates and times to register for Trudy’s online discussion group. Our free online discussion groups are open to all.

More about Trudy - Click Here

My name is Trudy Tynan and I am retired after 30 years as a reporter with The Associated Press. Fourteen years ago, I was diagnosed with HCM, at the age of 60, and have undergone an alcohol ablation and later an ablation for a-fib at Tufts Medical Center in Boston. I work part-time as a writing tutor at Holyoke Community College in western Massachusetts where I live and I have a passion for birding, especially seabirds. Being a discussion group leader affords me the opportunity to help a group that will ultimately encourage and support each other in facing our own individual journeys with HCM.

Sabrina Cuddy

Meet online discussion group host, Sabrina Cuddy. Sabrina is an alternate host for our monthly “Pre-myectomy” education discussion group. This discussion group is for those preparing for a myectomy. Click on our event calendar for exact dates and times to register for our "Pre-myectomy" online education discussion group. Our free online discussion groups are open to all.

More about Sabrina - Click Here

I am a health educator specializing in women's health, currently working as a pregnancy expert at Pregistry.com. I have many years of experience teaching prenatal health, childbirth, breastfeeding, and infant care as well as acting as a doula in the San Francisco Bay Area. I hold a BA in Psychology from the University of California, Berkeley, and a Master's of Public Health from San Jose State University.

In my other life, I am a mom (the last two just turned 18) and a costumer who performs onstage sometimes, works backstage a lot, and loves performing at the Dickens Christmas Fair in San Francisco.

After 35 years of misdiagnosis of symptoms, I was finally correctly diagnosed with HOCM and referred to the COE at Stanford where they did a quick trial of medications and 9 months later I had a myectomy. I couldn't walk half a block without being so short of breath I had to stop before my surgery. The surgery was life-changing for me and almost 4 years later I have very few symptoms.

I am very LGBTQIA friendly and respectful of all. I hope to use my skills as a health educator to run discussion group meetings to give back to the wonderful HCMA community and help people.

lynda montgomery

Meet online discussion group leader Linda Montgomery. Linda hosts our "Newly Diagnosed" education groups. These free, online education sessions are ideal for those who have been newly diagnosed (within the past two years) or for those who are new to the HCMA. Linda offers several dates & times each month to make it convenient for all to attend.

More about Linda - Click Here

I am one of seven children, which has taught me how to get along with different personalities, stand up for those who need it, and never forget where I came from. I've had an amazing career in Global Pharmaceuticals over the past couple of decades. Getting closer to the patients was always my goal, so I changed careers and got into Patient Advocacy. Along with being a Discussion Team Leader of the Newly Diagnosed, I've had the privilege of conducting many of your Intake Calls. I hope I've made you feel warmly welcomed into the HCMA community

While I do not have HCM, I have a passion for helping people with rare diseases and also transplantation. I work as a volunteer for an Organ Donation group.

I live in NJ and in my time away from the office, I enjoy visiting my son in Dallas, spending time with my English Bulldogs, and being outdoors.

Lisa Vecchione

Meet online discussion group host, Lisa Vecchione. Lisa co-hosts our "Pre-transplant" monthly discussion group with Dawn Levitt.

Click on our event calendar for exact dates and times to register for this online discussion group. Our free online discussion groups are open to all.

More about Lisa - Click Here

I was diagnosed with HCM in June of 2004

Experienced issues for many years before, but never dealt with. My Father also Had HCM and passed at age 70 in 2016, after many years of struggling.

I officially listed March 29, 2022, status 4, and had my Heart Transplant on 6-20-22 at NYU LANGONE at the age of 49.

I worked as an elementary and junior high school teacher before going on disability.

I also have Psoriatic arthritis and double hip replacements.

Degrees:

Union County Vocational-Technical in Cosmetology,
Teaching degree in Early Childhood Education at Union County College and attended Kean University.

I Volunteer for:

HCMA
American Heart Ambassador
Unos Ambassador
Sharing Network Ambassador
AARP volunteer
UCC Alumni Association member
Rutgers 4h Union County
I also head up the running of Church events at True Fellowship Ministry.