The LAM Foundation  Staff

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2 weeks ago

Anonymous

Anonymous created the event 2021 LAM Research Virtual Conference

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<h1><img alt="" src="/portals/0/FINAL%20CONFERENCE%20LOGO%20August%2020%2C%202021-02.png" style="width: 100%; height: auto;" title="" /></h1>
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<p style="text-align: left;">This workshop will highlight the recent advances in our understanding of the pathobiology of lymphangioleiomyomatosis (LAM) by using single cell RNA-sequencing. Following the presentations, there will be an open discussion aimed at synthesizing the combined knowledge from each unique investigation and devising strategies to address the key unanswered questions in LAM. Please join us on <strong>Friday, August 20, 2021, at 11:00 AM ET (3:00 PM GMT). </strong></p>
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<h2 rel="text-align: left;" style="text-align: left;"><strong>Chair:</strong>  </h2>

<h2 style="text-align: left; margin-left: 40px;"><img alt="" src="/portals/0/Scott%20Square.png" style="width: 125px; height: 125px;" title="" /></h2>

<p style="text-align: left; margin-left: 40px;"><strong>Scott Budinger, MD</strong><br />
Chief of Pulmonary and Critical Care in the Department of Medicine<br />
Ernest S. Bazley Professor of Airway Diseases<br />
Professor of Medicine (Pulmonary and Critical Care) and Cell and Molecular Biology<br />
Northwestern University Feinberg School of Medicine</p>

<h2 rel="text-align: left;" style="text-align: left;"><strong>Speakers:</strong>  </h2>

<p style="text-align: left; margin-left: 40px;"><img alt="" src="/portals/0/Nishant%20Square.png" style="width: 125px; height: 125p ...

2 months ago

Anonymous

Anonymous created the event Virtual Region 9 & 11 Educational Meeting

<h3><strong>Virtual Region 9 and 11 Educational Meeting </strong></h3>

<p><strong>When: </strong>June 23, 2021, at 6:30 PM ET </p>

<p><strong>Where:</strong> Zoom </p>

<p><em><strong>Please send your questions to:</strong> Kristin Kerwin, Region 9 LAM Liaison at </em><em>kerwink@ohio.edu</em></p>

3 months ago

Anonymous

Anonymous created the event LAM Action Virtual Meeting 2021

<h2 lang="EN-US" paraeid="{437f68f0-717e-4fb4-8ef0-94a6ade5249b}{183}" paraid="1597808354" xml:lang="EN-US"><strong>LAM Action Virtual Meeting 2021</strong></h2>

<p lang="EN-US" paraeid="{437f68f0-717e-4fb4-8ef0-94a6ade5249b}{183}" paraid="1597808354" xml:lang="EN-US">Our friends at <a href="http://lamaction.org/lam-action-virtual-meeting-2021/" target="_blank"><strong>LAM Action </strong></a>are hosting their 2021 annual meeting on June 12, 2021 as usual, but will take place online. Their agenda includes a presentation on "LAM Basics" by Professor Simon Johnson, updates on research and patient support, a presentation by Dr. Nishant Gupta, the Scientific Director of The LAM Foundation, and a celebration of the UK LAM Centre's achievements as it reaches its 10th birthday. </p>

<p lang="EN-US" paraeid="{437f68f0-717e-4fb4-8ef0-94a6ade5249b}{197}" paraid="1694471089" xml:lang="EN-US">For more information on the agenda and how to participate, please see the LAM Action website at <a href="https://nam04.safelinks.protection.outlook.com/?url=http%3A%2F%2Flamaction.org%2Flam-action-virtual-meeting-2021%2F&data=04%7C01%7Cccurrie%40thelamfoundation.org%7C02d66131365d47d21c1808d9245dbffb%7C83e17b56df4848b79bcb7c821fe3e215%7C0%7C0%7C637580807344414921%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C1000&sdata=0unEeVs%2F48u%2FI6DJgjQR3DBKQgF1eRR%2B4rOps0juZf8%3D&reserved=0" rel="noreferrer noopener" target="_blank">http://lamactio

3 months ago

Anonymous

Anonymous created the event Million Dollar Bike Ride

<h2><strong>The 8<sup>th</sup> Annual Million Dollar Bike Ride</strong></h2>

<p>Join Team Easy Breathers for the 8th Annual Million Dollar Bike Ride. They need <strong>YOUR HELP</strong> to reach their goal of $30,000. Every dollar raised by the LAM community, up to this amount, will be matched <strong>DOLLAR-FOR-DOLLAR, </strong>with 100% of the proceeds funding LAM research.  Help us reach a full match by donating <a href="https://tinyurl.com/MDBREasyBreathers" target="_blank"><strong>here.</strong></a> <br />
<br />
It’s not too late to join our team! Whether you’re cranking out the miles on your stationary bike or hitting the road, register <a href="https://www.milliondollarbikeride.org/registration" target="_blank">here</a> to help Team Easy Breathers pedal toward a cure for lymphangioleiomyomatosis.<br />
<br />
<a href="https://thelamfoundation.org/Blog/Article/Article/352/A-Million-Ways-to-Participate-in-The-Million-Dollar-Bike-Ride-2021#article"><strong>โ€ฏFor complete event details click here</strong></a><strong>.</strong>  </p>

3 months ago

Anonymous

Anonymous created the event On The LAM 5K

<p>This year, Shea Geyer is hosting her <strong>On The LAM 5K</strong> as a virtual event in honor of Worldwide LAM Awareness Month (WWLAM). Shea’s mother started this event during WWLAM 2019, after Shea was diagnosed with LAM in the fall of 2018. You can support The LAM Foundation from wherever you are and at whatever time fits your schedule during the weekend of <strong>June 26 – 27, 2021.</strong></p>

<p>Additionally, Shea’s event has been LAMplified. What does this mean? It means, if the $10,000 fundraising goal is achieved, it will be matched dollar-for-dollar by a generous donor, doubling the impact for a total of $20,000 raised!<br />
For more information, <a href="https://give.thelamfoundation.org/event/on-the-lam-2021/e335397" target="_blank">visit the event page and sign up today.</a><br />
<br />
To start your own online fundraiser during WWLAM, please visit <a href="http://www.thelamfoundation.org/wwlam">www.thelamfoundation.org/wwlam</a><a href="https://give.thelamfoundation.org/campaign/worldwide-lam-awareness-month-2021/c339630" target="_blank"> </a>or contact <a href="mailto:info@thelamfoundation.org">info@thelamfoundation.org</a>.</p>

3 months ago

Anonymous

Anonymous created the event LAMposium in Your Living Room

<h3 style="text-align: center;">June 2, 2021 | 7:00 PM ET | 4:00 PM PT</h3>

<h3 style="text-align: center;"><span style="color:#ec098d;"><strong>SUSAN JACOBS, MS, RN, FAAN</strong></span></h3>

<h4 style="text-align: center;"><strong>Supplemental Oxygen: Understanding and Optimizing Resources and Systems to Fit Your Needs </strong></h4>

<p style="text-align: center;">This presentation will provide an overview of oxygen basics, assessing the need for oxygen, what to expect from your provider, integrating oxygen into your fitness routine, and future trends in oxygen reimbursement and access.</p>

<p style="text-align: center;">This session will also highlight the patient experience and offer a demonstration and review of various oxygen systems. A group discussion will follow the presentations.</p>

<p style="text-align: center;">You will have an opportunity to ask questions during this educational session. You may also submit questions ahead of time to <a href="mailto:patientservices@thelamfoundation.org">patientservices@thelamfoundation.org</a>.</p>

4 months ago

Anonymous

Anonymous created the event Worldwide LAM Awareness Month

<p>Enter event description</p>

4 months ago

Anonymous

Anonymous created the event 2021 Fall Grant Process Open

<p><strong>2021 LAM Research Funding Cycle is OPEN!</strong></p>

<p>Scientists who wish to apply for Foundation funding must submit a Letter of Intent (LOI) using our <strong><a href="https://proposalcentral.com/" target="_blank">online application system</a> at ProposalCENTRAL</strong> <strong>by June 15th.</strong><br />
<br />
<strong>Pilot/Feasibility Award </strong>for $50,000 (One Year)<br />
<strong>Established Investigator Award</strong>  $150,000 (Two to Three Years)<br />
<strong>Francis X. McCormack Career Development Award </strong>for $180,000 (Three Years)<br />
<br />
To learn more about The LAM Foundation research awards and find the instructions on how to navigate our new platform <a href="https://www.thelamfoundation.org/Investigators/Grants/Grant-Opportunities" target="_blank"><strong>CLICK HERE</strong></a>.</p>

<p><a href="http://proposalcentral.com/" target="_blank">APPLY TODAY</a></p>

<p><em><strong>Please send your questions to:</strong></em> Judy Sheridan at <a href="mailto:jsheridan@thelamfoundation.org" target="_blank">jsheridan@thelamfoundation.org</a>.</p>

4 months ago

Anonymous

Anonymous created the event Public Advisory Roundtable Meet The Experts Forum

<p><strong>American Thoracic Society Public Advisory Roundtable Meet The Experts Forum</strong></p>

<p>Join our friends at the American Thoracic Society Public Advisory Roundtable for a Meet The Experts Forum on "Going Virtual with Patients and Families" on <strong>Saturday, May 15 at 10:00 AM EDT.</strong></p>

<p>Following the panel discussion, there will be an informal breakout room on TSC & LAM with Nishant Gupta, MD, Assistant Professor of Medicine, and the Director of the Interstitial Lung Diseases Center at Cincinnati Children's Hospital Medical Center.</p>

<p>Register by Friday, May 7: <a href="https://l.facebook.com/l.php?u=http%3A%2F%2Fow.ly%2FOriK50E57PG%3Ffbclid%3DIwAR0AHyWSUjvAymCTaziSD0EZF1Ag3el61Yr6wNRkz0_KuTv7A6v3teE2cEk&h=AT21giK3rel9pWwdTHy0ncs1tY_A2B6ec3pmIxw9IVpmr1zXKUafcKDL1eMkEVhkMREu49fam_MaO9dUBz11_xMNS6C91o2-EUiREWR1Rh4XjCLJ02Ayj8Rge0TTBqrUc6Kq&__tn__=-UK-R&c[0]=AT2DxalKLMo916dfMAI8uvMHcgAqwBndagSyV3O74whs_TxneV-fM01NA3mVtnwlQF6_DiJEXRixTCmSO9_Sc95PiV9w8EAGTtI5W1RMEF41naF7TJtSTJqKUqPTo2t9PPk5D3rk2MiLEK3JaN-D9jxgCe3O709RSpj1FvuADfnjHfE2xY-WlbNS33dHjM8eEbgs-8s" rel="nofollow noopener" role="link" tabindex="0" target="_blank">http://ow.ly/OriK50E57PG</a></p>

4 months ago

Anonymous

Anonymous created the event Regions 2, 3, & 4 Virtual Social Gathering

<h3><strong>Regions 2, 3, & 4 Virtual Social Gathering</strong></h3>

<p><strong>When:</strong> Saturday, May 22 at 10:00 AM ET</p>

<p><strong>Where: </strong>Zoom</p>

<p><em><strong>Please send your questions to:</strong> </em>Sarah Poitras, Region 3 Co-liaison, at <a href="mailto:sarahpoitras@gmail.com">sarahpoitras@gmail.com</a> or Jessica Barcellona, Region 3 Co-liaison, at <a href="mailto:jessicabarcellona4@gmail.com">jessicabarcellona4@gmail.com</a>.</p>

4 months ago

Anonymous

Anonymous created the event Circle of Hope Virtual Social Gathering

<h3><strong>Circle of Hope Virtual Social Gathering </strong></h3>

<p>This session will include two parts:</p>

<ul>
<li>Q&A with our COH medical director, Dr. Daniel Dilling, who will discuss what we know so far about the COVID-19 vaccine in solid organ transplant recipients</li>
<li>Group discussion—a chance for us to connect with and check in on one another</li>
</ul>

<p><b>When: </b><strong>Sunday, May 23, 2021 / 5:00 p.m. ET</strong></p>

<p>If you have a specific question for Dr. Dilling and/or a topic you would like addressed in the group discussion, please send it to Sharlene Dunn at <a href="mailto:sdunn@thelamfoundation.org">sdunn@thelamfoundation.org</a>. </p>

4 months ago

Anonymous

Anonymous created the event Region 6 Virtual Social Gathering

<h3><strong>Region 6 Virtual Social Gathering</strong></h3>

<p>When: Sunday, May 23, at 1:30 PM ET</p>

<p>Where: Zoom </p>

<p><em><strong>Please send your questions to:</strong> Susie Picart Region 6 LAM Liaison at </em><a href="mailto:jpicart788@aol.com">jpicart788@aol.com</a>. </p>

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4 months ago

Anonymous

Anonymous created the event Region 5 Virtual Social Gathering

<h3><strong>Region 5 Virtual Social Gathering</strong></h3>

<p><strong>When: </strong>Friday, May 21 at 7:00 PM ET</p>

<p><strong>Where: </strong>Zoom </p>

<p><em><strong>Please send your questions to:</strong> Mary Stojic, Region 5 LAM Liaison at </em><a href="mailto:mstojic@msn.com">mstojic@msn.com</a></p>

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4 months ago

Anonymous

Anonymous created the event Virtual Region 12 and Canada Educational Meeting

<p><strong>What: </strong>Virtual Region 12 and Canada Educational Meeting </p>

<p><strong>When: </strong>May 1, 2021, at 11:00 AM ET </p>

<p><strong>Where:</strong> Zoom </p>

<p><em><strong>Please send your questions to:</strong> Sharon Hovland, Region 12 LAM Liaison at <a href="mailto:sharonhovland@gmail.com">sharonhovland@gmail.com</a></em></p>

4 months ago

Anonymous

Anonymous created the event TSC/LAM Virtual Town Hall: COVID Vaccine Update

<p>The LAM Foundation has partnered with the <a href="https://www.tsalliance.org/" target="_blank">Tuberous Sclerosis Alliance</a> to host a Virtual COVID Vaccine Update Town Hall on <span style="color:#ec098d;"><strong>Tuesday, April 20 at 6:00 PM ET| 3:00 PM PT</strong>.</span></p>

<p>Peter Crino, MD, PhD of the University of Maryland Medical Center and Nishant Gupta, MD of the University of Cincinnati Medical Center will provide updates on the current COVID-19 vaccines in the TSC and LAM communities. Following the presentation, there will be time for viewers to ask questions.</p>

<p rel="text-align: center;"><a align="center" class="btn btn-primary" href="https://youtu.be/BWWj-uhNYSE" style="margin-left:auto;margin-right:auto; background-color:#ec098d; border:5px solid #ec098d; border-radius:5px; text-align:center;">WATCH NOW</a></p>

4 months ago

Anonymous

Anonymous created the event LAMposium in Your Living Room

<div class="AwardsWrap">
<div class="ARight">
<div class="Bio">
<h3 class="card-text" style="text-align: center;"><img alt="" src="/portals/0/Sue%20Sherman%2C%20Chief%20Executive%20Officer%20.jpg" style="height: 244px; width: 244px;" title="" />                    <img alt="" src="/portals/0/Judy%20Sheridan%20-%20Grants%20and%20Reserach%20Manager%20-%20photo%202021.jpg" style="width: 270px; height: 244px;" title="" />                      <img alt="" src="/portals/0/Molly%20Long%20-%20Vice%20President%2C%20Development%20%26%20Communications%20-%202021.jpg" style="width: 195px; height: 244px;" title="" /></h3>

<h3 class="card-text">                          <strong><span style="color:#ec098d;">Sue Sherman                                               Judy Sheridan                                               Molly Long</span></strong></h3>

<h3 paraeid="{e1989fa1-7078-4360-823a-7b809971200e}{110}" paraid="658008946"><st

8 months 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>

10 months 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>

10 months 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

11 months 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?

11 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>

12 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 

1 year 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 Manager1 year 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>

1 year ago

CTidwell

CTidwell

๐Ÿ˜Ž

1 year 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>

1 year 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>

1 year 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>

1 year 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 …

1 year 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>

1 year 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?

1 year 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

1 year ago

Pattie

Pattie

Ok

1 year ago

mraymond

mraymond

๐Ÿ˜€

1 year 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. 1 year ago
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