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 two meetings each 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 over 20+ group meeting opportunities each month.  

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

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SYDELLE ZINN

Sydelle Zinn holds discussion groups on the 1st and 3rd Monday of each month.  Click on our event calendar for exact dates and times to register for a meeting with Sydelle.  Our free online discussion groups are open to all.

Bob

Bob Eldridge

Bob leads online discussion groups on the 1st and 3rd Tuesday of each month.  Click on our event calendar for exact dates and times to register for a meeting with Bob.  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

Gwen leads online discussion group meetings on the 2nd and 4th Tuesday of each month.  Click on our event calendar for exact dates and times to register for a meeting with Gwen.  Our free online discussion groups are open to all.

Debra

Debra Rafson

Online discussion group leader, Debra, holds meetings on the 1st Wednesday and 3rd Friday of each month.  Click on our event calendar for exact dates and times to register for a meeting with Debra.  Our free online discussion groups are open to all.

Terry

Terrence "Terry" Fague

Terry leads online discussion group meetings on the 2nd and 4th Monday of each month.  Click on our event calendar for exact dates and times to register for a meeting with TerryOur free online discussion groups are open to all.

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PAUL PERLMAN

Paul leads online discussion group meetings on the 2nd and 4th Thursday of each month.  Click on our event calendar for exact dates and times to register for a meeting with Paul.  Our free online discussion groups are open to all.

Karen

Karen Newstrom

Online discussion group leader, Karen, holds meetings on the 2nd and 4th Thursday of each month.  Click on our event calendar for exact dates and times to register for a meeting with Karen.  Our free online discussion groups are open to all.

Greg (2)

greg levalley

Greg leads online discussion group meetings 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 GregOur free online discussion groups are open to all.

Lynda

lynda neuhausen

Lynda leads online discussion group meetings on the 1st and 3rd Tuesday of each month.  Click on our event calendar for exact dates and times to register for a meeting with Lynda.  Our free online discussion groups are open to all.

Trudy

trudy tynan

Online discussion group leader, Trudy, holds meetings on the 1st and 3rd Thursday of each month.  Click on our event calendar for exact dates and times to register for a meeting with Trudy.  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.