Support Groups

Welcome! Support groups provide a way for individuals suffering from Mast Cell Disorders ~ and their caregivers ~ to communicate with each other, support each other, provide comfort and often share information that makes their daily lives better. TMS offers a variety of support opportunities, please see the contact listing at the bottom for your specific area.

Local Support Groups: See the contact listing below. These meet one or more times every year, usually for just a couple of hours, to share experiences… sometimes there is an expert speaker invited and other times it is an informal gathering to share together or meetup for coffee, etc. Its an amazing experience to connect with others on this disease journey and share experiences and tips – and hugs! Find your area’s support group from the list below, you are also welcome to contact/travel to one in another state if there isn’t a Leader in your area yet. Many of these groups also offer facebook peer support groups. Contact them to join meetings/groups or just ask a question. We hope to be offering phone-in chat sessions for home-bound patients very soon! To hold any of these meetings we need Leaders, so if you don’t see someone listed below, please consider volunteering, you don’t need to be an expert on anything, just willing to help get everyone together.  TMS will provide training, guidance and any assistance you need, please contact supportgroups@tmsforacure.org  Upcoming local and regional support group meeting dates are listed here: https://tmsforacure.org/resources/support-group-meeting/

National Biennial TMS Patient/Caregiver Conference: In odd-numbered years a large three-day Biennial National Patient/Caregiver Conference (approx 200 attendees) is held in different areas of the country each time.  This is a wonderful place to meet other patients, share your journey, and its very exciting to listen to (and meet!) expert physicians speaking about mast cell diseases, new research and treatments, etc with Q&A time. A structured Support Group time and informal fun mingle activities are also scheduled, as well as a Children’s area where playtime and Pediatric support is available for parents and children (accompanied children are welcome). Some scholarships are available. Information about the current conference can be found here: https://tmsforacure.org/tms-conference/. Hope to see you there!

Regional Support Group Meetings: In even-numbered years the TMS community comes together by region, holding full-day Regional Expanded Support Group Meetings in different areas of the country. Members in the surrounding states will also receive invitations, there will be one or more speakers scheduled, breaks, and sharing time (local groups may still hold their own groups in addition to these). Upcoming local and regional support group meeting dates are listed here: https://tmsforacure.org/resources/support-group-meeting/

Private peer-to-peer support (non-medical) and sharing is available on Facebook, you can visit “The Mastocytosis Society, Inc.” https://www.facebook.com/groups/155824303735/ 

Public TMS news is provided at “The Mastocytosis Society Inc Newshttps://www.facebook.com/The-Mastocytosis-Society-Inc-News-934144373407985/

Medical questions can be asked of TMS RNs in a private forum at TMS.Inspire.com or by email to nurses@tmsforacure.org

Other online communities: https://tmsforacure.org/resources/online-support-communities/

We hope to meet you soon! For general questions about support groups or interest in starting/assisting one in your area, please reach out to: supportgroups@tmsforacure.org


Alabama

supportgroups@tmsforacure.org


Alaska

supportgroups@tmsforacure.org


Arizona

Susanne Bragg

AZsupport@tmsforacure.org


Arkansas

supportgroups@tmsforacure.org


California

Northern California

Cay O.

northerncaliforniasupport@tmsforacure.org

San Francisco

Cay O.

sfbaysupport@tmsforacure.org

Southern California

Davita G.

southerncaliforniasupport@tmsforacure.org

_______________________________________________________________________________

Colorado

Jan Marie Smith

coloradosupport@tmsforacure.org


Connecticut

Sara Gemmill, RN

CTsupport@tmsforacure.org


Delaware

(See Virginia/Maryland/Delaware/DC post below)

Deborah Maude

Deborah.Maude@tmsforacure.org


Florida

Michele Kress

floridasupport@tmsforacure.org

Deborah Zeoli

daytonabeachsupport@tmsforacure.org


Georgia

Emily Bolden

georgiasupport@tmsforacure.org


Hawaii

Looking for Leader(s) who could run groups for the Hawaiian islands over Gotomeeting!

supportgroups@tmsforacure.org


Idaho

supportgroups@tmsforacure.org


Illinois

Chicago  

Jeannie Dunn /Emily Ploegman

chicagosupport@tmsforacure.org


Indiana

Pam Hodge

indianasupport@tmsforacure.org


Iowa

supportgroups@tmsforacure.org


Kansas

supportgroups@tmsforacure.org


Kentucky

supportgroups@tmsforacure.org


Louisiana

supportgroups@tmsforacure.org


Maine

supportgroups@tmsforacure.org


Maryland

(See Virginia/Maryland/Delaware/DC post)

Deborah Maude

WashingtonDCsupport@tmsforacure.org


Massachusetts

Patty Wright

WesternMAsupport@tmsforacure.org


Michigan

Melanie W.

michigansupport@tmsforacure.org


Minnesota / North Central States

Kristine Greer

minnesotasupport@tmsforacure.org


Missouri

Kansas City

Brenda & Patrick Hukriede / Becky Kihlmire

kcMOsupport@tmsforacure.org

Springfield/Branson area

Heather Largent / Gloria Walker

SpringfieldBransonMOsupport@tmsforacure.org

St. Louis

stlouisMOsupport@tmsforacure.org


Montana

supportgroups@tmsforacure.org


Nebraska

supportgroups@tmsforacure.org


Nevada

RenoNVsupport@tmsforacure.org


New Hampshire

Matt Trahan

NHsupport@tmsforacure.org


New Jersey

supportgroups@tmsforacure.org


New Mexico

supportgroups@tmsforacure.org


New York

Jan Hempstead

NYsupport@tmsforacure.org


North Carolina

Emily Bolden / Sharon Renfroe

northcarolinasupport@tmsforacure.org

Pediatric meetings: Kelly & Anthony Bennett

NCPediatricSupport@tmsforacure.org


North Dakota

supportgroups@tmsforacure.org


Northeast / New England States

(Also see “Massachusetts” above)

northeastsupport@tmsforacure.org


Ohio

Michelle Cox

ohiosupport@tmsforacure.org


Oklahoma

supportgroups@tmsforacure.org


Oregon / Washington/Pacific NW

Northern Oregon & Washington (Pacific NW area)

Looking for leader(s)!

pnwsupport@tmsforacure.org

Southern Oregon & Northern California area

southernoregon@tmsforacure.org


Pennsylvania

Kathie Murphy

pennsylvaniasupport@tmsforacure.org

Pittsburgh Area

Shelly Faris /Anna Longo

PittsburghPASupport@tmsforacure.org


Rhode Island

supportgroups@tmsforacure.org


South Carolina

supportgroups@tmsforacure.org


South Dakota

supportgroups@tmsforacure.org


Tennessee / Southeast States

supportgroups@tmforacure.org


Texas

Kristy & Balwinder

DallasTXsupport@tmsforacure.org

Celeste Finnerty

HoustonTXSupport@tmsforacure.org


Utah

supportgroups@tmsforacure.org


Vermont

supportgroups@tmsforacure.org


Virginia / Maryland / Delaware/DC

Judith Emmel & Deborah Maude

washingtonDCsupport@tmsforacure.org

virginiasupport@tmsforacure.org


Washington DC

(See Virginia/Maryland/Delaware/DC post)

Deborah Maude

washingtonDCsupport@tmsforacure.org


Washington State

(See Oregon/Washington/Pacific NW post)

supportgroups@tmsforacure.org


West Virginia

supportgroups@tmsforacure.org


Wisconsin

supportgroups@tmsforacure.org


Wyoming

supportgroups@tmsforacure.org


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International

This website hosts countries from around the world, in their own languages, containing resources available there and supporting the annual International Awareness Day on October 20 each year: www.mastocytosis-mcas.org

TMS also collaborates with these sister organizations around the world whenever possible:


Australia

David & Heather Mayne

info@mastocytosis.com.au


Brazil

Lisa Morrison Thuler

Mastocitose Brasil: mastocitosebrasil@gmail.com


Canada

Shawna Lechner-Rumpel, President

shawna.lecher@sasktel.net

support@mastocytosis.ca

306.789.9800


Germany

www.mastozytose.com

www.mastocytosis.eu


United Kingdom

Dawn Brogden, Co-Chair

dawn@ukmasto.org

Jess Hobart, Co-Chair

jess@ukmasto.org

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