maria pearson

maria pearson created the event Patient Benefit Research Conference and LAMposium LA

We welcome the LAM community, along with LAM researchers and clinicians, to gather in Southern California from November 9-12, 2017. Patient Benefit Research Conference and LAMposium LA will focus on finding new therapies or products that will offer benefit to women living with LAM in five years or less.

2 days ago

    SLH

    SLHreceived the badge Getting started

    Earned the Getting started badge!
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    3 days ago

    Anne McKenna - Community Manager

    Anne McKenna - Community Managerasked the question: Participate in LAM Research

    Want to participate in LAM research? We currently have a researcher who is looking for chyle samples. If you can help, please reach out to me at (877) 287-3526 or amckenna@thelamfoundation.org and I'll give you more details! If you have any questions, …

    1 week ago

    Anne McKenna - Community Manager

    Anne McKenna - Community Manager

    Want to participate in LAM research? We currently have a researcher who is looking for chyle samples. If you can help, please reach out to me at (877) 287-3526 or amckenna@thelamfoundation.org and I'll give you more details!

    1 week ago

      Jacqueline faith

      Jacqueline faith

      I always feel tired and out of breath... But im. Happy

      1 week ago

        MichelleLam

        MichelleLam

        Good Afternoon Everyone....My daughter is 18yrs old and was diagnosed 2 years ago with LAM. Any advice in how I can make her to be more positive with this illness?

        1 week ago

        • SharleneDHello Michelle,
          I am sorry to hear about your daughter, and I am glad you reached out with your question. The diagnosis of a rare disease is difficult, as you know. Thankfully, there is quite a bit of information available to us regarding LAM and, for me, staying "in the know" is one of the things I do to stay positive with this disease process. Although there is no "one size fits all" answer to your question, I am happy to share what has worked for me over the years.

          As I mentioned, I read everything I can find pertaining to LAM. One caveat here--make certain to read current information, as old literature and statistics can be quite discouraging. I also stay in contact with other LAM patients. Although it took me some time to reach out to others, nowadays, there are many women eager to talk and share their stories. Your daughter may find this approach helpful. And, if she's particularly interested in connecting with gals her own age, you might ask The LAM Foundation staff to get her connected. Your daughter is definitely on the young side for receiving a diagnosis of LAM. As such, I suspect that connecting with someone close to her age would be helpful--just to talk about whatever stuff comes up.

          Finally, another thing that has helped immensely in my quest to stay positive: exercise. In whatever form it may take on any given day, just move the body. It's good for the endorphins and it's good for the spirit. Anything. Just a bit of movement.

          I hope this is helpful to you, Michelle. Know that I am open to talking with you and/or your daughter any time.

          Again, thank you for posting your question. Hope to hear back from you. :)6 days ago

        maria pearson

        maria pearson created the event LAM/TSC Conference Series in Houston, TX

        On Saturday, April 22, The LAM Foundation is partnering with the TS Alliance to host a regional education conference. This FREE day long educational meeting will be held at the Texas Training and Conference Center in Houston, Texas and will provide important updates on LAM/TSC research priorities as well as a forum for dialog about treatment and progress toward improving quality of life for those living with sporadic LAM and TSC. Women and families with sporadic LAM and TSC LAM are encouraged to attend.  

        2 weeks ago

          itcecsa

          itcecsaasked the question: health products and supplement

          Is there any health products that's good for LAM patients, what about supplements? Thanks!

          1 month ago

          itcecsa

          itcecsaasked the question: Food choices

          I was told by LAM doctor to avoid eating estrogen and hormones food. Can someone give me a list of food in those 2 categories? Thanks!

          1 month ago

          maria pearson

          maria pearson created the event LAM Education Meeting in Atlanta, GA

          LAM Liaison Alvie Dupree is hosting a LAM Education meeting at Emory Saint Joseph's Hospital with LAM Clinic Director Srihari Veeraraghavan, MD, and Sue Sherman, The LAM Foundation's Executive Director.

          Women with LAM, family and friends are all welcome to join us for an afternoon gathering to learn about LAM research, news from the Foundation and connecting to one another.

          1 month ago

            maria pearson

            maria pearson created the event LAM Education Meeting in La Jolla, CA

            LAM Liaison Patricia Ortiz and LAM Clinic Director Kamyar Afshar, DO, have put together a full agenda of multi-disciplinary presentations, you won't want to miss. Women with LAM, family and friends are all welcome to join us 

            1 month ago

              maria pearson

              maria pearson created the event LAM Education/LAMposium Planning Meeting at the NIH

              The LAM Foundation is hosting LAMposium in Washington, DC, for the first time on June 22-25, 2017. We are excited to partner with the Region 5 LAM Community to welcome women with LAM, family members and friends to Washington, DC. 



              We invite you to be a part of our team. Join us on Tuesday, December 13 at 5:00 pm at the National Institutes of Health (NIH) for an evening of education and a kick-off planning session for LAMposium DC. 



              Dr. Joel Moss will begin the evening with his Tuesday night LAM Q&A session followed by a LAMposium DC kick-off meeting with The LAM Foundation staff. Receive first-hand insight and up-to-date details for the event and learn how to get involved to create a memorable, action-packed weekend for the LAM Community next June. Even if you cannot attend the NIH meeting in person, you can still take part.  Conference call instructions are listed below.



              Our success in Washington, DC, will rely on local enthusiasm, connections and partnerships. If you would like to be a part of the planning committee, please register below and tell us how you would like to participate. 

              1 month ago

                maria pearson

                maria pearson created the event LAM Education Meeting in Salt Lake City, UT

                LAM Liaison, Lynnette Weese is planning a LAM Education meeting at the University of Utah Hospital. Women with LAM, family and friends are all welcome to join us! 


                LAM Clinic Director, Robert Paine III, MD, will join us to answer all of our questions. William Pazos, Coordinator of Pulmonary Rehab, will also join us to give us tips on correct breathing techniques and exercises to keep our lungs healthy and strong.

                The meeting is free and light refreshments will be served.

                1 month ago

                  Marna

                  Marnaasked the question: Joint Pain

                  Does anyone on Sirolimus experience joint pain and if so what is it like? I have been having pain in my left foot that comes on goes. Trying to figure out if it from Sirolimus or something else.

                  1 month ago

                  maria pearson

                  maria pearson created the event LAM Education Meeting in Salt Lake City, Utah

                  LAM Liaison, Lynnette Weese is planning a LAM Education meeting scheduled Wednesday, December 14. Women with LAM, family and friends are all welcome to join us! 

                  LAM Clinic Director, Robert Paine III, MD, will join us to answer all of our questions and William Pazos, Coordinator of Pulmonary Rehab, will also join us to give us tips on correct breathing techniques and exercises to keep our lungs healthy and strong.

                  The meeting is free and light refreshments will be served.

                  1 month ago

                    maria pearson

                    maria pearson created the event LAM Education Meeting in San Diego

                    LAM Liaison, Patricia Ortiz, is planning an afternoon of LAM education where women with LAM, family and friends can gather to connect and learn. University of California (San Diego) LAM Clinic Director, Kamyar Afshar, DO, will present. Everyone is welcome! 

                    1 month ago

                      maria pearson

                      maria pearson created the event LAM EducationMeeting and LAMposium Planning Meeting, Washington, DC

                      Join us on Tuesday, December 13 at 5:00 pm at the National Institutes of Health (NIH) for an evening of LAM education and a kick-off planning session for LAMposium DC. 



                      Dr. Joel Moss will begin the evening with his Tuesday night LAM Q&A session followed by a LAMposium DC kick-off meeting with The LAM Foundation staff. Receive first-hand insight and up-to-date details for the event and learn how to get involved to create a memorable, action-packed weekend for the LAM Community next June. Even if you cannot attend the NIH meeting in person, you can still take part.  

                      1 month ago

                      • JPipitoLAMposium in DC!! That makes me so excited for it is only a couple hour drive for me :) 1 month ago

                      maria pearson

                      maria pearson created the event '90's Prom to Benefit The LAM Foundation, Nashville, TN

                      DRESS IN YOUR 90'S BEST AND DANCE THE NIGHT AWAY FOR A GOOD CAUSE


                      90's Prom to Benefit The LAM Foundation

                      DATE: Sunday, January 15, 2017 

                      TIME: 7:00 PM

                      PLACE: Tin Roof Nashville

                      ADDRESS: 1516 Demonbreun Street

                      Nashville, TN

                      2 months ago

                        maria pearson

                        maria pearson created the event Breath of Hope Gala

                        SAVE THE DATE!



                        Breath of Hope Gala

                        Hyatt Regency Washington Capitol Hill

                        400 New Jersey Avenue, NW

                        Washington, DC 20001

                        2 months ago

                          maria pearson

                          maria pearson created the event International Research Conference on LAM/TSC and LAMposium DC

                          SAVE THE DATE!


                          The International Research Conference on LAM and TSC and LAMposium DC

                          Hyatt Regency Washington Capitol Hill

                          400 New Jersey, Ave.  NW

                          Washington, DC 20001

                          2 months ago

                            maria pearson

                            maria pearson created the event International Research Conference on LAM/TSC and LAMposium DC

                            SAVE THE DATE!



                            The International Research Conference on LAM and TSC and LAMposium DC

                            Hyatt Regency Washington Capitol Hill

                            400 New Jersey, Ave.  NW

                            Washington, DC 20001

                            2 months ago

                              maria pearson

                              maria pearson created the event International Research Conference on LAM/TSC and LAMposium

                              SAVE THE DATE!


                              The International Research Conference on LAM and TSC and LAMposium DC

                              Hyatt Regency Washington Capitol Hill

                              400 New Jersey, Ave.  NW

                              Washington, DC 20001

                              2 months ago

                                maria pearson

                                maria pearson created the event LAM Education Meeting in Portland, OR

                                SAVE THE DATE!



                                LAM Education Meeting in Portland, OR

                                Saturday, April 15, 2017

                                Event details, times and location to follow.

                                But we do know that LAM Clinic Director, Dr. Matthew Drake, from Oregon Health and Science University will join us.




                                For additional information you can contact Sharlene Dunn at sharlene.dunn.home@gmail.com

                                2 months ago

                                  maria pearson

                                  maria pearson created the event LAM Education Meeting in Seattle, WA

                                  SAVE THE DATE

                                  Saturday, April 29, 2017


                                  Join LAM Clinic Director George Pappas, MD from Swedish Medical Center for an afternoon gathering to offer updates on the latest LAM research.


                                  Details to follow including location and time.

                                  2 months ago

                                    SharleneD

                                    SharleneDanswered the question Transplant Evaluation

                                    Hello KP, I received a bilateral transplant in October 2010. I first began the evaluation process in about 2004. My FEV1 had dropped to 28%, and my local pulmonologist felt it was time for me to be evaluated. Following the first couple of appointments …

                                    2 months ago

                                    Kia

                                    Kiaasked the question: Transplant Evaluation

                                    For those who have had a transplant or are waiting, how did you decide when to evaluate? Would you share your FEV1, DLCO, and oxygen requirements at the time? Thanks.

                                    2 months ago

                                    Jacqueline faith

                                    Jacqueline faith

                                    Positive but tired

                                    2 months ago

                                      maria pearson

                                      maria pearson created the event LAM Meeting in Wyndmoor, PA

                                      Women with LAM, family and friends are all invited to a Holiday Potluck at the home of Patti Bebien-Aronoff, Region 4 Co-Liaison in Wyndmoor, PA.


                                       A presentation from LAMposium 2016 will also be available to those interested.


                                      Please RSVP by November 20th

                                      2 months ago

                                        Beverly

                                        Beverlyanswered the question What do you use to carry your oxygen tanks?

                                        To add more to this answer. I also like to hike though the length of the hike is limited by the number of tanks I can carry. I use a normal backpack and carry 3 of the M9 tanks in it.

                                        3 months ago

                                        Beverly

                                        Beverlyanswered the question What do you use to carry your oxygen tanks?

                                        I use the hydration backpacks, also. I have a couple of Camelbaks that I use for M9 tanks. I like to be "hands free" so I don't like the over the shoulder type the oxygen company provides. The hydration backpacks have straps that go around the chest and …

                                        3 months ago

                                        maria pearson

                                        maria pearson created the event LAM Meet the Experts Reception in Scottsdale, AZ

                                        You are invited to join members of The LAM Foundation's Scientific Advisory Board (SAB) for an evening of education and connection at The Scottsdale Resort at McCormick Ranch. Women with LAM, family and friends are all welcome to meet with some of the most knowledgeable LAM Researchers and Clinicians in the world at this unique event.


                                        3 months ago

                                          SharleneD

                                          SharleneDanswered the question Has anyone used oxygen in the pool?

                                          Hi Jean, I, too, love the water and wanted to stay with it, even while using oxygen. I didn’t do water exercise classes or aerobics, but I did swim a lot of laps. My set up was this: --7 ft. cannula --high flow tubing --E cylinder on cart --oxygen …

                                          3 months ago

                                          maria pearson

                                          maria pearson created the event LAM Education Meeting in Richmond, VA

                                          LAM and TSC patients, family members and friends are all welcome to the Mid-Atlantic Regional Education Meeting.Mid-Atlantic Regional Meeting.


                                          Joel Moss, MD, PhD, Deputy Chief, Cardiovascular and Pulmonary Branch, National Heart, Lung, and Blood Institute, National Institutes of Health,  will present the latest LAM information, research and protocols.  Bring your questions!!!

                                          3 months ago

                                            KerriMorgan

                                            KerriMorgananswered the question What was your favorite thing about RLDC LAMposium 2016?

                                            I loved all the session!! So much information for patients, family members, and professionals. Dr. McCormack's 10 LAM Pearls was AWESOME!!!

                                            3 months ago

                                            maria pearson

                                            maria pearson created the event LAM Education Meeting in Elgin, IL

                                            Women with LAM, family and friends are all welcome to join us for an afternoon gathering of friendship at Marie Glasby's home. LAM Liaisons and your hosts, Marie Glasby and Kathy Peiffer, will share their experiences at the RLDC•2016•LAMposium along with some of the presentation videos from LAMposium. If you were unable to attend LAMposium this year or want to reconnect with those you met at LAMposium, this will be a great gathering.


                                            Warm hors d’oeuvres and beverages will be served. Please feel free to bring your favorite sweets to share.

                                            3 months ago

                                            • KiaMarie and I are looking forward to a relaxing afternoon at her home this Saturday, November 12th. We will watch Dr. McCormack's session from lamposium "LAM Pearls" followed by discussion and sharing. We will also demonstration LAM 360 and present some of the latest LAM news. It's not too late to join us!2 months ago

                                            Jean D

                                            Jean Dasked the question: Has anyone used oxygen in the pool?

                                            I used to swim a lot, until I became too short of breath. Now that I am using oxygen for exercise, I would like to start swimming laps at the local pool once again. Does anyone have any experience or any suggestions re managing oxygen tanks around the …

                                            3 months ago

                                            Barb

                                            Barb

                                            Anna, I am so happy to hear from you. August 31, 2016, my right lung was 80 percent collasped. I had a chest tube placed. A CT scan of my lung showed multiple lung nodules every where. I had surgery on my right lung, a VATS, pleurodesis, wedge resections. Initially I was told that the nodules were inflammation, but later found out I Have LAM. I am really scared. Will be going to University of Michigan.I am so glad you reached out to me, I felt like I was dealt a death sentence.

                                            3 months ago

                                            • Anne McKenna - Community ManagerHi Barb,

                                              I'm sorry that you were feeling so scared but I'm so glad you found The LAM Foundation. As you can see, there are a lot of reasons to be hopeful. If there is anything further I can do to help, please don't hesitate to give me a call at the Foundation at 513-777-6889.

                                              Take care,
                                              Anne3 months ago

                                            • GwenPHi Barb: Anne told me you had posted here and I wanted to welcome you. Since you are going to the University of Michigan, I would assume that you live in Michigan. I am the patient liaison for the state of Michigan. I have LAM too and have lived with LAM for almost 17 years. My job as a liaison is to help patients (either newly diagnosed or not) to deal with LAM issues whether it be finding a doctor, giving LAM information, or just being a listening ear for you if you need it. I would love to talk with you. You can reach me privately at gcpryor@gmail.com. I look forward to hearing from you! 3 months ago

                                            SharleneD

                                            SharleneDanswered the question What do you use to carry your oxygen tanks?

                                            Hi Jean, For exercising with oxygen, I preferred a hydration pack with the belly removed; this worked great for the M9 tanks. Later, when those tanks became too heavy for me, I used thick sponge padding to modify a lightweight backpack to nicely support …

                                            3 months ago

                                            Jean D

                                            Jean Dasked the question: What do you use to carry your oxygen tanks?

                                            I recently started using oxygen for exercise. My oxygen supplier gave me a cloth "over-the-shoulder" bag to hold a D tank, but the D tank is fairly heavy, and not practical for exercising (unless I'm on the treadmill or stationary bike.) They also …

                                            3 months ago

                                            lisa M

                                            lisa M

                                            Doing very well. Thankful and blessed.

                                            3 months ago

                                              maria pearson

                                              maria pearson created the event LAPS For LAM in Chowchilla, CA

                                              Join us as we walk to raise awareness for lymphangioleiomyomatosis (LAM) and provide funding for research to find a cure for LAM.

                                               The event takes place on the tracks at the Chowchilla Union High School Football Stadium on Saturday, October 15 starting
                                              at 10:00am. Walk as little or as much as you want. Each lap around the track consists of a quarter mile. The total individual goal is 15 miles.

                                              Register TODAY and receive a free t-shirt. *T-shirts are only guaranteed for pre-registrations submitted by October 5, 2016. Register between now and October 5 and receive 3 free raffle tickets!

                                              3 months ago

                                              Sally nagel

                                              Sally nagelanswered the question Chest Pain in LAM patients

                                              the only time I have chest pain is due to stress.. or if I drink something and it goes down the wrong way....

                                              3 months ago

                                              Sally nagel

                                              Sally nagel

                                              had to re-register today... my bad... hope all is well with every one! had a great weekend with the ladies... if I didn't get to meet you .. I was sin fundraising off and on throughout the weekend.... also got the MRI done.. had no issues with it

                                              3 months ago

                                              maria pearson

                                              maria pearson created the event LAM Education Meeting in St. Louis, MO

                                              Women with LAM, family and friends are welcome to learn about all that took place at the 

                                              RLDC•2016•LAMposium from Washington University LAM Clinic Director, Adrian Shiffren, MD. LAM Liaisons, Carmen Iglesias and Marla Hamlin, are hosting this meeting and will share a lite dinner with everyone along with their summary and photos from LAMposium 2016. Join us!

                                              3 months ago

                                                maria pearson

                                                maria pearson created the event LAM Education Meeting in Portsmouth, NH

                                                SAVE THE DATE!

                                                Sunday, November 6, 2016

                                                Souheil El-Chemaly, MD, LAM Clinic Director from Brigham and Women's Hospital will review all that took place at the RLDC 2016 LAMposium.


                                                More information coming.


                                                Contact Madeline Nolan at CURELAM@AOL.COM to RSVP 

                                                3 months ago

                                                  Lynndi

                                                  Lynndianswered the question What was your favorite thing about RLDC LAMposium 2016?

                                                  I loved seeing this event 'up close and personal' after hearing about it every year previously when I didn't attend. Thanks for Cincinnati in September vs. March in Chicago! I'm ready for LAMposium East 2017.

                                                  3 months ago

                                                  Anne McKenna - Community Manager

                                                  Anne McKenna - Community Managerasked the question: What was your favorite thing about RLDC LAMposium 2016?

                                                  I sincerely enjoyed meeting so many new people and putting faces with names of those I've only talked with on the phone.

                                                  3 months ago

                                                  Anne McKenna - Community Manager

                                                  Anne McKenna - Community Manageranswered the question Chest Pain in LAM patients

                                                  Chest pain is actually very common for women with LAM. Check out the webinar, hosted by the American Thoracic Society and given by Dr. Ruoss about chest pain here . It's at the bottom of the page. I hope you find this information helpful!

                                                  3 months ago

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