Anonymous

Anonymous created the event Giving Tuesday

1 month ago

Anonymous

Anonymous created the event How to Best Integrate the LAM Clinic Network in Your Care | LAMposium In Your Living Room

<h2 align="center"><strong>LAMPOSIUM IN YOUR LIVING ROOM</strong></h2>

<h3 align="center"><span style="color:#ec098d;"><strong>WEDNESDAY, DEC 2 – 7:00 PM ET</strong></span></h3>

<p align="center">How to Best Integrate the LAM Clinic Network in Your Care by Nishant Gupta, MD</p>

<p align="center"><a href="https://us02web.zoom.us/meeting/register/tZctf--qqT8vHdZcXp7ZByoDHD-QWDbS0bvN">Register here</a></p>

1 month ago

Anonymous

Anonymous created the event TSC Research Symposium 2020

<h3 data-fontsize="22" data-lineheight="26.4px">The Tuberous Sclerosis Association, TS Alliance, and The LAM Foundation have come together to proudly organize the TSC Research Symposium 2020!</h3>

<p>The TSC Research Symposium 2020, taking place <strong>November Friday 13, 2020, 15:00 – 18:00 GMT via Zoom</strong>, is an important half-day professional research event focused on emerging research around TSC and COVID-19.</p>

<p>For more information visit here: https://tuberous-sclerosis.org/for-professionals/research-symposium-2020/</p>

1 month ago

Anonymous

Anonymous created the event Circle of Hope Webinar & Group Discussion

<h3 align="center"><strong>CIRCLE OF HOPE WEBINAR & GROUP DISCUSSION</strong></h3>

<h3 align="center">WEDNESDAY, NOV 18 – 7:00 PM ET</h3>

<p align="center">Lung Transplantation in the time of COVID: What has changed? What has remained the same? by Dan Dilling, MD</p>

<p align="center"><em>The registration link will be available soon. </em></p>

1 month ago

Kathi

Kathi answered the question Is there can I find an information source to provide medical guidelines regarding vaccines?

Hello - fellow LAMmie here - I believe the live virus is not good for us. I am on rapamune.
Sue S. also answered the question Sue S. also answered the question

1 month ago

D. Wiley

D. Wileyasked the question: Is there can I find an information source to provide medical guidelines regarding vaccines?

Is there can I find an information source to provide medical guidelines regarding vaccines..... live virus versus recombinant?

1 month ago

klieu

klieureceived the badge Getting started

Earned the Getting started badge!
Annie_CruzeladylawyerTXDana Danielaand 1588 others also received the badge Annie_Cruzeand 1590 others also received the badge

2 months ago

Anonymous

Anonymous created the event LAMposium In Your Living Room

<h3><span style="color:#ec098d;"><strong>CHARLIE STRANGE, MD</strong></span></h3>

<p paraeid="{e1989fa1-7078-4360-823a-7b809971200e}{110}" paraid="658008946">October 7, 2020 | 7:00 PM EST | 4:00 PST</p>

<p paraeid="{e1989fa1-7078-4360-823a-7b809971200e}{110}" paraid="658008946"><strong>From Biopsies to Pleurodesis: Understanding Surgical Interventions for LAM</strong></p>

<p paraeid="{e1989fa1-7078-4360-823a-7b809971200e}{61}" paraid="757103437">Dr. Strange, LAM Clinic Director at the Medical University at South Carolina, will discuss what is often a patient’s introduction to LAM—pneumothorax. This informative session will also explore other surgical interventions, such as pleurodesis, angioleiomyoma resection, and lung transplantation. We will also discuss opportunities to avoid surgery unless necessary.</p>

<p paraeid="{e1989fa1-7078-4360-823a-7b809971200e}{61}" paraid="757103437"><a href="https://us02web.zoom.us/meeting/register/tZMlf-6opzIjGdTdyQ92117e5Lm5Nm1-AXXe?fbclid=IwAR3ThAsCYej02rdIwmjMIOKq2H0qBnHCohj-7hu07ywsbjBQsZTC-sQVUxo" target="_blank">REGISTER HERE</a></p>

2 months ago

Marisol

Marisol

Hi does anyone recorded this conference? or is there any link or document with the info discuss?


Track 2 (LAM): Pregnancy and Delivery in Women with LAM
Speaker: Joseph Barney, MD, LAM Clinic Director, University of Alabama
at Birmingham



thanks 

2 months ago

  • AnonymousThank you for the question, Marisol.  
    Yes - this session was recorded. After the session ends, the recording is edited and then posted. The LAM Foundation will notify when the link to view is posted. This takes about 5 days to complete. So be looking for an email or Face Book post (on The LAM Foundation's page) when it is available. I will also note your inquiry to let you know when it is available.    Mary Sue  Patient Services Manager2 months ago
Molly Long

Molly Long created the event Laps for LAM Virtual Walk

<p>12th Annual Lap for LAM has gone virtual! </p>

<p><a href="https://give.thelamfoundation.org/event/virtual-laps-for-lam/e298290">https://give.thelamfoundation.org/event/virtual-laps-for-lam/e298290</a></p>

2 months ago

CTidwell

CTidwell

๐Ÿ˜Ž

2 months ago

Anonymous

Anonymous created the event TS Alliance - Comedy For A Cure

<h2><strong>Fall Virtual Edition | October 18, 2020 </strong></h2>

<h3><span style="color:#ec098d;"><strong>8 PM ET | 7 PM CT | 6 PM MT | 5 PM PT</strong></span></h3>

<p>Read more details at <a href="https://tsalliance.schoolauction.net/comedy2020/">https://tsalliance.schoolauction.net/comedy2020/</a></p>

3 months ago

Anonymous

Anonymous created the event Early Stage Investigator Symposium

<h3><strong><em>This event is designed for Early Stage Investigators </em></strong></h3>

<p>In 2015, a small group of young TSC researchers from the UK organized a meeting, just prior to the TSC International Conference in Windsor, specifically geared toward young investigators working in TSC and LAM. The idea was to provide an opportunity for young scientists working on TSC and LAM to present their work in an informal environment, connect with colleagues from all over the world, and build new collaborations to promote the future of TSC research.</p>

<p>Building upon the success of the Early-Stage TSC Researcher Meeting in 2019, The LAM Foundation announces the addition of the Early Stage Investigator Symposium to our research conference in 2020.  We are now presenting this opportunity virtually due to global and environmental circumstances. </p>

<h3><strong>Join us virtually on October 8, 2020 </strong></h3>

<h4><span style="color:#ec098d;"><b>October 8 | 11:00 AM - 1:30 PM </b></span></h4>

<p>The LAM Foundation believes in the new generation of researchers in the TSC and LAM field, and the Early Stage Investigator Symposium is a tremendous opportunity to inspire young, brilliant scientists to continue working in TSC and LAM. We look forward to working with you! </p>

<p><strong>A link to the agenda and registration will be available soon. </strong></p>

3 months ago

Anonymous

Anonymous created the event Early Stage Investigator Symposium

<h3><strong>Join us virtually on September 22 and October 8, 2020 </strong></h3>

<h4><span style="color:#ec098d;"><b>September 22 | 11:00 AM - 1:30 PM </b></span></h4>

<p>The LAM Foundation believes in the new generation of researchers in the TSC and LAM field, and the Early Stage Investigator Symposium is a tremendous opportunity to inspire young, brilliant scientists to continue working in TSC and LAM. We look forward to working with you! </p>

<p><strong>A link to the agenda and registration will be available soon. </strong></p>

3 months ago

Anonymous

Anonymousanswered the question Is there any data regarding the benefits of a warm climate and salt air for LAM patients?

Thank you for your question. I have done some research (and continue to do so) in reference to the effect of climate on LAM. I have not found much information on this. Information is posted on the American Lung Association's webpage for those with …

3 months ago

Anonymous

Anonymous created the event LAMposium In Your Living Room

<h3><strong>ROBERT KOTLOFF, MD</strong></h3>

<p paraeid="{e1989fa1-7078-4360-823a-7b809971200e}{110}" paraid="658008946">September 2, 2020 | 7:00 PM EST | 4:00 PST</p>

<p paraeid="{e1989fa1-7078-4360-823a-7b809971200e}{110}" paraid="658008946"><b>Rapamycin: From Fruit Flies to Easter Island and MILES In Between </b></p>

<p>This presentation by LAM specialist Dr.โ€ฏKotloffโ€ฏwill cover the rationale for why rapamycin appeared to be an excellent drug for treating LAM, what we learned from the MILES trial, and our experience in using rapamycin. Dr.โ€ฏKotloff will also discuss who is eligible to receive this treatment, its potential side effects, and what questions remain about the risks and benefits associated with its use. </p>

<p>The registration link will be available soon. To view more information about the LAMposium In Your Living Room series visit <a href="https://thelamfoundation.org/LAMposium-In-Your-Living-Room">https://thelamfoundation.org/LAMposium-In-Your-Living-Room</a></p>

3 months ago

Peterspj

Peterspjasked the question: Is there any data regarding the benefits of a warm climate and salt air for LAM patients?

We moved from Tennessee for Florida a year ago and my wife's condition has improved rather than worsen over time?

3 months ago

Anonymous

Anonymous created the event ATS Public Advisory Roundtable (PAR) Meet-The-Experts

<p paraeid="{842b537c-43bf-4cf5-8b98-b0d20d85c70d}{225}" paraid="278273980">The ATS Public Advisory Roundtable (PAR) is hosting its 14th annual Meet-the-Experts patient/family education forum on Wed, July 15th from 3:00-5:00 pm EST. The theme for this year’s virtual forum is “Be a Champion for Your Lung Health” and the focus of the talks will be on different practices to help patients take charge of their lung health and actively advocate for their own care. Each talk will be presented by an expert pulmonologist from institutions such as the University of Pennsylvania, University of Pittsburgh and Mt. Sinai. There will also be a Q&A segment for patients and their families to ask questions of the presenters. </p>

<p paraeid="{842b537c-43bf-4cf5-8b98-b0d20d85c70d}{231}" paraid="1390088134"> </p>

<p paraeid="{842b537c-43bf-4cf5-8b98-b0d20d85c70d}{235}" paraid="214212808">Register now:</p>

<p paraeid="{842b537c-43bf-4cf5-8b98-b0d20d85c70d}{235}" paraid="214212808"><a href="https://register.gotowebinar.com/register/7151038217690459663" rel="noreferrer noopener" target="_blank">https://register.gotowebinar.com/register/7151038217690459663</a> </p>

4 months ago

Anonymous

Anonymous created the event Looking Toward the Future in LAM

<p>As part of "LAM Week at the ATS" and in conjunction with PAR partner The LAM Foundation, the American Thoracic Society will host a webinar on Thursday, July 16th from 2:00pm-3:00pm EST titled "Looking Toward the Future in LAM" and will be presented by Nishant Gupta, MD, Assistant Professor of Medicine at the University of Cincinnati.</p>

<p>Register Now: </p>

<p><a href="https://register.gotowebinar.com/register/2137818249094835212">https://register.gotowebinar.com/register/2137818249094835212</a></p>

<p> </p>

5 months ago

Anonymous

Anonymous created the event Sjรถgrenโ€™s Foundation - 2020 Virtual National Patient Conference

<div>Join the Sjögren’s Foundation for their National Patient Conference as a virtual / on-line event. You will experience the same valuable educational topics from leading Sjögren’s experts but from the comfort of your own home and computer. This two-day educational experience will give you the tools to take control of your health and learn how to manage and understand your Sjögren’s symptoms and complications.</div>

<p> </p>

<p>Register now: </p>

<p><a href="https://www.crowdcast.io/e/2020_Sjogrens_Virtual_NPC/register?autoJoin=true&session=1">https://www.crowdcast.io/e/2020_Sjogrens_Virtual_NPC/register?autoJoin=true&session=1</a></p>

5 months ago

Noah Hammes

Noah Hammes created the event Wellness Wednesday โ€“ Pilates with Eden Pontz

<p>Enter event description</p>

5 months ago

Pattie

Pattieanswered the question What do folks put on their medical ID bracelet?

I am getting a digital medical alert bracelet. It has a sim card attached for medical people to just plug and play your whole medical history. Amazon

5 months ago

Pattie

Pattie

Ok

5 months ago

mraymond

mraymond

๐Ÿ˜€

6 months ago

  • AnonymousWelcome back mraymond. We are happy to have you visit the activity feed page of LAM360!  If you have questions or comments that you would like to share - we would like to hear from you. 5 months ago
Mae

Mae

Are there any Lammies out there in the health care field that have been sheltering in place at home due to COVID19 and, as restrictions are lifted, are returning to the workplace?  Other than social distancing, hand washing, wearing a mask, etc., what are your routines to ensure as much safety as possible? Thank you. 

6 months ago

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