Connect With Other LAM Patients

Online Connections

Facebook

If you use Facebook be sure to check out The LAM Foundation’s page.  We post news and upcoming events on the page as they happen.  Everyone in the LAM community is encouraged to join us on Facebook; you can does this by going back to the main page of the website and click on the "f" on the right side of the page.

There is a second page on Facebook that is for LAM patients only.  It is a closed group which means you must be “invited” into the group. This ensures that only women with LAM can post to the group. LAM patients who use this Facebook page have experienced an amazing expansion of their worlds.  They live everywhere from Alaska to Ohio to England to Australia.  Topics range from a patient’s own special anecdotal method of “scientific research” (What has been your experience with holistic treatments? How old were you when you first noticed shortness of breath? What is a bronchoscopy like?) to sharing jokes and personal feelings.

Many women with LAM find it tremendously therapeutic and often uplifting to communicate in this way.  When one patient feels discouraged, another can lift her up.  When one has a question, she can receive many (usually different) answers. If you would like to join this special Facebook page contact Sally Lamb at slamb@thelamfoundation.org.

The LAM Patient Listserv

The name Listserv is short for list server.  A Listserv is an electronic mailing list, often referred to as a discussion list.  This service is an automatic group mailing through email; when a subscriber sends an email to the Listserv address, everyone subscribed to the Listserv receives the message.  There are currently over 200 people subscribed to the Listserv.

The LAM patient Listserv is an electronic link specifically for LAM patients around the world to communicate with one another at no cost through an ongoing dialogue about topics concerning their lives as affected by LAM.  The Listserv is not moderated.  All messages are broadcast to every subscriber.  You can monitor the discussions for a couple of days before submitting an email to the entire Listserv.

The Listserv is recommended to anyone who would like to share daily thoughts, frustrations, and/or questions with others.  LAM patients who would like to join the Listserv can contact Sally Lamb at slamb@thelamfoundation.org.

LAM Liaison Patient Network (North America)

To help patients connect with one another the Foundation has developed the LAM Liaison Patient Network.  This network is comprised of 20 regions within the United States and Canada.  The regions are based on patient numbers, geography, and proximity to an established and/or future LAM Clinic.  Each region is coordinated by a LAM Liaison, who is appointed and trained by The LAM Foundation.  The Liaisons serve as links between the Foundation and the women with LAM within their regions, and they facilitate communication among those patients and their families.  Women who give their permission will receive a personal phone call or email from their Liaison after contacting the Foundation.

Liaisons answer questions whenever possible, provide points of contact with the patients in their regions, and help coordinate regional meetings.  Eventually, each region will hold an annual one-day meeting—not to replace the annual LAMposium in Cincinnati but, rather, to supplement it since not all patients are able to travel long distances.  Using their personal knowledge of the region and the public relations expertise of The LAM Foundation, Liaisons help raise awareness of LAM and The LAM Foundation, serve as advocates for the Foundation, and participate in media and public relations activities as needed.

The LAM Liaison program ensures that all women with LAM and their families receive the personal attention they both need and deserve.  Here is a list of LAM Liaison regions:

New England Region (1)
Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont

Western PA / New York Region (2)
Western Pennsylvania, Northwestern New York

New York Region (3)
New York City

New Jersey / Philly Region (4)
Eastern Pennsylvania, New Jersey

Mid-Atlantic Region (5)
Delaware, Maryland, Virginia, Washington DC

South Atlantic Region (6)
Georgia, Eastern Tennessee, North Carolina, South Carolina

Florida Region (7)
Florida, Puerto Rico

Southern Region (8)
Alabama, Mississippi, Western Tennessee

Midwest Region (9)
Indiana, Kentucky, Ohio, West Virginia

Illinois Region (10)
Illinois

Michigan Region (11)
Michigan

Northern Plains Region (12)
Minnesota, North Dakota, South Dakota, Wisconsin

Central Plains Region (13)
Iowa, Kansas, Missouri, Nebraska

Gulf Region (14)
Arkansas, Louisiana, Eastern Oklahoma, Eastern Texas

South Central Region (15)
New Mexico, Western Oklahoma, Western Texas

Mountain Region (16)
Colorado, Utah

Northwest Region (17)
Idaho, Montana, Wyoming

Northern Pacific Region (18)
Alaska, Oregon, Washington

Mid Pacific Region (19)
Northern California, Northern Nevada

Southern Pacific Region (20)
Arizona, Hawaii, Southern California, Southern Nevada

Canada

If you would like to contact the LAM Liaison in your region click here to see a regional map. On the map, just click the region where you live.  A pop-up window will display with the name and email address of your LAM Liaison.  A list of nearby LAM Clinics will also display.

Worldwide LAM Patient Coalition

The LAM Foundation’s Worldwide LAM Patient Coalition (WLPC) was formed to collaborate with LAM patient organizations in other parts of the world.  We believe there are many ways to collaborate with other countries that have assembled and organized LAM patients into a cohesive group.
The WLPC is an excellent avenue to increase numbers for clinical research projects, facilitate research, and aid in recruitment for clinical trials. The LAM Foundation is excited about this partnership that will ultimately advance LAM science. We are convinced that we can greatly impact the lives of women with LAM through the WLPC and bring hope to LAM patients worldwide!
LAM patient leaders within the WLPC are known as ”LAMbassadors.”  The WLPC has LAMbassadors from 18 countries:  Australia, Austria, Brazil, Canada, China, France, Germany, Italy, Japan, Mexico, New Zealand, Norway, Romania, Spain, Sweden, The Netherlands, United Kingdom, and United States.  The following is a list of LAMbassadors and Medical Advisors for each country.  To visit a WLPC member’s website please copy and paste their address below in your address bar.

LAM Australasia Research Alliance (LARA), Australia
www.lara.org/au
Heather Telford, LAMbassador
Allan Glanville, MD, FRACP, Medical Advisor

LAM Austria, Austria
www.lamaustria.com
Viera Reptova, LAMbassador
Sabine Hummer, MD, Medical Advisor

Associação LAM do Brasil, Brazil
www.alambra.org.br
Flavia Sobroza, LAMbassador
Carlos Carvalho, MD, PhD, Medical Advisor

LAM Canada, Canada
www.lamcanada.org
Marsha Cohen, MD, FRCPC, LAMbassador

LAM China
www.lamchina.net
Lily Wong, LAMbassador
Kai-Feng Xu, MD, Medical Advisor

LAM Action, UK
www.lamaction.org
Gill Hollis, LAMbassador
Simon Johnson, MD, Medical Advisor

Association FLAM, France
http://asso.orpha.net/FLAM/
Corine Durand, LAMbassador
Vincent Cottin, MD, Medical Advisor

LAM Selbsthilfe Deutschland, Germany
http://lam-info.de/
Britta Hoing, LAMbassador
Hubert Wirtz, MD, Medical Advisor

Italy
www.lam-italia.org
Iris Bassi, LAMbassador
Sergio Harari, MD, Medical Advisor

J-LAM, Japan
http://j-lam.org
Reina Endo, LAMbassador
Yoshikazu Inoue, MD, Medical Advisor

LAM Mexico
www.fundacionLAMexico.com
Carmen Sanchez, LAMbassador
Roberto Mercado Longoria MD, Medical Advisor

The Netherlands
www.lam-nederland.nl
Ine Van Meijeren, LAMbassador
Jan Grutters, MD, Medical Advisor

New Zealand LAM Charitable Trust, New Zealand
www.lam.org.nz
Bronwyn Gray, LAMbassador
John Kolbe, MD, Medical Advisor

LAM Norway, Norway
Kristin Seim, LAMbassador
Anne Naalsund, MD, Medical Advisor

LAMRomania, Romania
www.lamromania.ro
Cezar Caluschi, LAMbassador
Mugur Bosinceanu, MD, Medical Advisor

AELAM, Spain
www.aelam.org
Mari Luz Vila, LAMbassador
Antonio Roman, MD, Medical Advisor

LAM Academy, Sweden
Anette von Koch, LAMbassador
Maryam Fathi, MD, PhD, Medical Advisor

The LAM Foundation, United States
Susan Milligan, LAMbassador
Frank McCormack, MD, Medical Advisor