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From Sue Sherman, Executive Director

On a recent trip to Philadelphia, I was picked up by an Uber Driver named Kelvin. Remarkably, in our short, 30-minute ride, he touched my heart and reminded me again how extraordinary our LAM community is…

When he saw that I was on my way to a hospital, Kelvin asked me if I was in the healthcare field. I replied yes. He asked because he had recently experienced some very difficult health challenges. I asked him if he would share.

In January of 2014, Kelvin came down with a bad case of the flu that progressed to pneumonia. Kelvin is a big man, formerly a construction worker. He ignored his pain and figured it would clear. He had children to feed and a wife to support. When the gurgling in his chest woke him up one morning, he realized he needed to see a doctor. 

Long story short, Kelvin’s trip to the ER that morning resulted in a 3-month coma and 12 months of rehab. While his lungs have recovered, he has a severe case of tracheal stenosis – a narrowing of his windpipe from scarring. Multiple procedures, surgeries and expert opinions have not helped. He now gets winded going up a set of stairs and is challenged with explaining to his family why he cannot work or keep pace like he used to. 

Kelvin does what he can to help around the house, has become an Uber driver to supplement the family income and relies on his faith to get him through. “I keep trying,” he said, “but it’s hard.” We talked about oxygen therapy and finding a support group.  Kelvin’s path to breathlessness was different than the path of our women with LAM – and one day he may experience a full recovery. In the meantime he faces a lonely world of endless questions and difficult decisions.

Kelvin does not have LAMposium – but we do. Two days and nights filled with clinical and scientific experts, women and families living with LAM, celebrations and friendship. Our coming together for 19 years led to a treatment. Next it will lead to a cure. REGISTER TODAY! Your participation makes a difference. REGISTER TODAY! We’re expecting a record number of attendees and hotel rooms are limited. REGISTER TODAY! Contribute to a better future for everyone living with LAM or a rare lung disease. We said it FIRST… We are Stronger Together! 

Register for LAMposium TODAY!

The LAM Foundation is expecting a record number of attendees at the 2016 International Rare Lung Diseases Research Conference and LAMposium (RLDC•2016•LAMposium). Currently, over 100 women with LAM, as well as their family and friends have already registered for the RLDC•2016•LAMposium. Plus we are expecting twice as many researchers and clinicians due to the RLDC workshops and the Clinic Director Congress! Register today so we can plan for your arrival!

Don’t forget to reserve your hotel rooms at the Cincinnati Marriott at RiverCenter. Hotel rooms are filling up quickly. Click here to reserve your rooms for the weekend.

Let’s break down the numbers:

  • 0 dollars for women with LAM to attend LAMposium in Cincinnati, Ohio, September 22 – 25, 2016
  • 2 Full days to connect with LAM researchers, clinicians, women with LAM, their family and friends
  • 3 Meals a day are included with full registration
  • 3 Morning yoga sessions with Kat Steele
  • 21 Presentations on LAM research updates and insights into living with LAM
  • 3:30pm Saturday Happy Hour for Spouses and Partners of women with LAM
  • 35 LAM Clinic representatives from around the world will be in attendance
  • 1 Celebration night, the Breath of Hope Gala, devoted to women with LAM and LAM research

Make sure your family and friends register before early registration ends on Sunday, August 21, 2016. Prices go up after August 21! We look forward to seeing you in September!

Tissue Donation Crucial to Finding a Cure for LAM

The good news is over the last seven years there has been a decline in lung transplants for LAM patients here in the United States. However, this news means that LAM researchers need fresh LAM lung tissue to advance LAM research. The LAM Foundation is partnering with the National Disease Research Interchange (NDRI) to gather and distribute LAM tissue to LAM researchers and scientists as quickly as possible to aid in the continuation of LAM research.

Successful collection of LAM tissue for research requires careful planning. Time is of the essence both before surgery and once the tissue is collected because special procedures are needed to keep it alive for research.

Watch this video to find out why fresh tissue is vital to finding a cure.

If you have been diagnosed with LAM and have a surgery or a lung transplant planned, please contact Anne McKenna to learn how to have your tissue donated.

Nicole Seefeldt, a LAM patient who is currently on a lung transplant list, shares her own struggle to make certain her tissue donation paperwork was in order and all of her doctors, surgeons, and researchers were aware of her request to donate her lungs for research. You can read all about her lung donation “dry run”, in her blog post.

Travel/Breathe/Repeat

LAM Liaison from New York City, Sarah Poitras, and her husband Justin, are taking a one year sabbatical to travel the world and they want to share their adventures with the LAM community! Sarah and her husband are blogging about their travel experiences, implications of travel with a lung disease, managing oxygen, and all while meeting LAM clinicians and patients around the globe.

Sarah and Justin are one month into their adventure. You can read about their travels and who they are meeting by reading their blog, Travel/Breathe/Repeat. Check out their blog to join the adventures of this curious couple.

The LAM Foundation Welcomes Margie Witt

The LAM Foundation is happy to welcome Margie Witt to our staff as Office Manager. Margie has an extremely diverse background, including long-term care, banking, landscape design and professional organizing and she studied English at Kentucky University and Northern Kentucky University. Margie lives in Northern Kentucky with her husband, Michael and their three children, Robert, Jacob and Sarah.

In her spare time, Margie is very involved in her community. Each spring, she coordinates an annual “Clean Up Day”. She also chairs the Cincinnati Horticultural Society Secret Garden committee. Margie also has a bit of a race medal addiction. She is an avid half-marathon walker and will be completing her eighth race the weekend before LAMposium.

Please join us in welcoming Margie to The LAM Foundation. You can send her a message at mwitt@thelamfoundation.org.

LAM Quilts Squares and Fabric Lungs Needed!

This year, Stacey Wheelus is creating two small quilts for the Breath of Hope Silent Auction and she needs your help to design the quilts! Stacey is sewing together one traditional quilt using fabric squares and one with fabric lungs. “One for the ladies who love the quilts with squares, and one for fun, created using the theme of the lungs from the conference logo as our template. You will have to come to LAMposium to see them both!” says Stacey.

Be a part of either (or both!) of these quilts. Click here to download the lung template and square instructions and learn how to add your creative touch to each quilt. All squares and lungs must be sent to Stacey ASAP!

Mobile App Keeps LAMposium at Your Fingertips!

The LAM Foundation is partnering with GuideBook again this year to host a Mobile App for the 2016 International Rare Lung Diseases Research Conference and LAMposium (RLDC•2016•LAMposium).

This year RLDC•2016•LAMposium will be held at the Northern Kentucky Convention Center (NKYCC) where everyone will have access to free WiFi. By using the mobile app, downloaded to your smartphone, access to the entire schedule of the conference will be within your reach!

By using our mobile app you will have access to:

  • Add your profile along with a photo of yourself to share with other attendees
  • Look up others in attendance and receive their profile information
  • Receive and send emails to others in attendance
  • Review the RLDC and LAMposium presentation descriptions
  • Schedule your days and build your own personal agendas
  • Read bios for all of the presenters at the conference
  • Receive notifications on upcoming events taking place later in the day
  • Check out the Roundtable Discussion schedules
  • Learn about research studies taking place in our Research Room

Access to our Mobile App will be ready for you to download on your phone next week. Look for the guidebook icon in your apps store and search for RLDC•2016•LAMposium.

Easy Ways to Raise Money for The LAM Foundation

Are you looking for some easy ways to raise money for The LAM Foundation? We have solutions for you! SELL Breath of Hope Raffle Tickets! Order a stack of raffle tickets and sell them to your friends, family, co-workers or anyone who wants to take a chance to WIN a trip to Palm Springs, CA, a luxurious necklace and earring set or $1,000 cold hard cash!

You can also purchase your own raffle tickets for a chance to win! Tickets are $25 each or 5 for $100. To order your tickets, send a check to The LAM Foundation or call with credit card information today! You don’t need to be present at the Breath of Hope Gala to win! ALL PROCEEDS support The LAM Foundation!

Or you can donate an item to this year’s Breath of Hope Gala Silent Auction! Those who bid on items at the Silent Auction are drawn to destination experiences, electronics, handbags, jewelry, gift cards, and sports memorabilia. Check out our Silent Auction Wish List by clicking here. Your donation can be tax deductible too! Fill out the form and get it back to us by August 15th to have your donated items included.

Sponsor a Table for the Breathe of Hope Gala

The LAM Foundation is extremely grateful to all of the Sponsors and Partners who make the 2016 International Rare Lung Diseases Research Conference and LAMposium possible.

We’d like to offer a very special thank you to our Breath of Hope Gala Sponsors: Novartis, Ed Plocharczyk, Andrew & Kim Romanosky, Deborah Yudes, Dawn Haugom, Laura Lentz and Don Wolnik.

Want to get your name added to this list? You can sponsor a table at the Breath of Hope Gala on behalf of your family and friends or your company. Table sponsorship includes dinner for 10 (at a savings of $250), recognition in the Gala program and an inspiring evening at The LAM Foundation’s largest annual fundraiser. Click here to reserve your table today!

Sponsors come in all sizes! Email kjensen@thelamfoundation.org for more details on sponsorship levels.

Participate in the Fund A Cure Auction Now

Raise your paddle early (and often!) and Fund A Cure! 100% of every dollar donated to Fund A Cure goes directly to LAM research. Fund A Cure has already raised over $21,000 this year, but more is needed to continue our ongoing scientific research to find a cure for LAM.

Here’s how your donation can help The LAM Foundation:

  • $1,000 can provide support to LAM Clinic Directors to collaborate on clinical trial designs.
  • $500 can pay for tissue samples for a basic science study
  • $250 can support regional meetings to identify and educate patients about ongoing research
  • $100 can help fund a biomarker study
  • $75 can support a Pilot Project, Established Investigator grant, or scientific meeting

Click here to DONATE NOW and select “Research” under “Use my donation to support”.

MRI Research Study Taking Place at LAMposium

LAM Researchers at Cincinnati Children’s Hospital Medical Center are conducting a study that may help to identify LAM earlier.  Women with LAM who are coming to LAMposium in September have a unique opportunity to take part in this study!

This study, Use of Hyperpolarized 129Xe MR Lung Imaging in Children and Adults, utilizes hyperpolarized (HP) xenon gas during an MRI as a way to observe characterizations of the lung as well as progression of LAM. This study will require women to travel to Cincinnati Children’s Hospital Medical Center to have an MRI completed while they are in town for LAMposium Thursday – Saturday, September 22- 24.

Enrollment is open and women who wish to participate are encouraged to begin the process by consenting and scheduling appointments by calling the study coordinators, Erin Watters at 513.803.7024 or Laurie Vanderah, BSN, at 513.803.0003.

To read more about this and other studies you can participate in, click here.

Current Trials and Studies

Interested in participating in research?  Check out our Current Trials and Studies page on our website to learn more about how you can participate. 

Texas Regional LAM Meeting was a Hit!

by: Madeline DuBose Williams

Hello from Texas!!

Women from Arkansas, Texas and Oklahoma at all stages of their journey with LAM joined us at Abuelo's Mexican Restaurant in Plano, TX. LAM Lead, Beverly Jackson, joined me to talk about oxygen therapy, University of Texas Southwest Medical Center, the Dallas LAM clinic and LAMposium. It was a great success and I felt honored to share my journey with LAM and transplantation. I can't forget my partner in crime, Susan DuBose (my mom), who also discussed her role as the caregiver in all this.

We're already discussing the next gathering in November and I'm looking forward to adding more women with LAM to this group!!

Save the Date!
LAM/TSC Educational Event in Cleveland

On Saturday, November 5, 2016, The LAM Foundation is partnering with the TS Alliance to host the third and final combined Regional LAM/TSC Educational Event of the year. On Saturday, this daylong educational meeting will be held at the Cleveland Clinic.

By collaborating, we can share how these two rare diseases are connected, share updates on research for each disease and find ways to improve quality of life for those living with LAM and TSC. The day’s agenda is still being formulated but we do know LAM Clinic Director, Robert Kotloff, MD will present on managing LAM symptoms.

This daylong conference is FREE for all who attend. You are welcome to join us for the day or for just a few presentations. Lunch will also be provided.

Here are the details:

Date: Saturday, November 5, 2016
Registration begins at 8:00am
Conference runs from 9:00am - 4:00pm
The Cleveland Clinic
TT Building — Jennings Education
2045 East 90th Street
Cleveland, OH 44195

Click here to RSVP for the event.

If you have questions, give The LAM Foundation a call at 877.287.3526 or send an email to info@thelamfoundation.org.

Learn More About LAM Events in Your Area

Want to see if there are any LAM events happening in your area?  Check out the Events Calendar on our website to find out more about our regional events. 

It’s Time to LAMplify your Event!

Over the first six months of 2016, seven community fundraisers took the LAMplify Challenge Grant and doubled the proceeds they generated from their events. Now it’s your turn to LAMplify your event!

LAMplify applications for events taking place through the end of the year are available to DOUBLE the impact of your community event. Can you commit to raising $5,000, $10,000, $20,000 or even $50,000? If so, The LAM Foundation can help you match your net proceeds, dollar for dollar!

The LAM Foundation wants to recognize the Western New York Friends of the Foundation, Joanne Unger, Andrea Slattery, Tee it Up for LAM!, SLAM LAM 5K!, the Pontz Family, and Morphotek for taking on the LAMplify Challenge. Because of their hard work, every dollar donated to their community events was “LAMplfied" from $240,000 into more than $400,000!

Take on a LAMplify Challenge Grant and double the impact from your community event. Send an email to development@thelamfoundation.org to receive your LAMplify application and get started today.

Re-enroll Your Kroger Community Rewards

Thank you to everyone for participating in Kroger Community Rewards! Your continued participation is valuable to The LAM Foundation. Between August 1 – August 31, the Kroger Community Rewards program requires that you re-enroll and choose The LAM Foundation as your non-profit of choice onto your Kroger Plus Card so that you can continue to donate when you shop. When you re-enroll during the month of August, the Foundation receives the benefit of 12 full months of proceeds from this rewards program.

Ask your family and friends to also choose The LAM Foundation as their organization of choice. It’s an easy way for everyone to raise money for the Foundation. The more you shop at Kroger, the more money the Foundation receives!

The new year of giving through Kroger Community Rewards starts September 1, 2016. If you do not re-enroll before August 31, you will be dropped from the program until you re-enroll. Click here and shop for The LAM Foundation today!

Copyright © 2016 The LAM Foundation, All rights reserved.
March 2016 Currents
Our mailing address is:
4520 Cooper Road, Suite 300 Cincinnati, Ohio 45242
513.777.6889 
www.thelamfoundation.org

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