Research

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.

image.6

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.

Bob

Bob Eldridge

Meet online discussion group host, Bob Eldridge. Bob co-hosts a monthly “General Discussion of Life with HCM” Discussion Group. Click on our event calendar for exact dates and times to register for Bob’s online discussion group.  Our free online discussion groups are open to all.

Salberg

LISA SALBERG

Lisa is HCMA's Founder and CEO.  Lisa holds three online discussion groups monthly to educate and support those who are newly diagnosed, on a transplant pathway or preparing for a myectomy.  Click on our event calendar for exact dates and times to register for one of Lisa's meetings. Our free online discussion groups are open to all.

Gwen

GWEN mAYES

Meet online discussion group host, Gwen Mayes. Gwen hosts a monthly “Emotional Support” Discussion Group. 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.

Debra

Debra Rafson

Meet online discussion group host, Debra Rafson. Debra hosts a monthly “Diagnostic Journey” 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.

Terry

Terence "Terry" Fague

Meet online discussion group host, Terence “Terry” Fague. Terry co-hosts a monthly “General Discussion of Life with HCM” Discussion Group. Click on our event calendar for exact dates and times to register for Terry’s online discussion groups.  Our free online discussion groups are open to all.

WIN_20201013_14_53_59_Pro (1)

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.

Karen

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.

Greg (2)

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.

Lynda

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.

Trudy

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.

Amanda (2)

Amanda Rodriguez-Michel

Amanda and HCMA Founder and CEO, Lisa Salberg, lead this online discussion group meeting on the 2nd and 4th Wednesday of each month.  Click on our event calendar for exact dates and times to register for a meeting with Amanda and LisaOur free online discussion groups are open to all.