From Sue Sherman, Executive Director

“You'll never plow a field by turning it over in your mind.”

Old Irish Proverb

It’s not often that I have an excuse to quote a clever Irish proverb, so I’m jumping on this one! 

Today marks the end of March and this issue of Currents is a great example of the wisdom of moving from thought to action – and may just be the most action-packed issue I’ve ever read.

April:

• Four LAM Regional Meetings from Chicago to Texas to the Pacific Northwest! 
• 90’s Prom in Nashville – First time fundraiser, Sara Lawler

May:

• LAM Regional Meetings in Philadelphia and Boston
• Dean Family Crawfish Boil in Nashville
• American Thoracic Society’s Meet the Experts in Washington, DC
• Penn Medicine Orphan Disease Center’s Million Dollar Bike Ride 
• The Air We Breathe Campaign educates OB/Gyn physicians at ACOG in San Diego and Emergency Room physicians at the SAEM in Orlando

June:

• Worldwide LAM Awareness Month (WWLAM) 
• International Research Conference on TSC and LAM & LAMposium DC (including a FDA Patient-Focused Drug Development meeting, LAM Day on Capitol Hill and the Breath of Hope Gala)

November:

• Patient Benefit Research Conference & LAMposium LA – first ever west coast LAMposium and Breath of Hope Gala!

If you’ve ever had an idea to support The LAM Foundation, wanted to reach out to someone with LAM or simply get more involved, stop turning it over in your mind and “just do it”. Lives are improved when we take part and this year there are more opportunities than ever – choose the ones that speak to you.

LAM Week at ATS and the ATS International Conference

In May, the American Thoracic Society (ATS) is hosting their annual International Conference in Washington, DC. Our Executive Director, Sue Sherman, along with Katie Jensen and Anne McKenna, will share LAM awareness, education and resources with pulmonary, critical care and sleep professionals. Laura Bowers will also be there to promote the new LAM treatment guidelines to physicians with the Air We Breathe Campaign.

Join us on Saturday, May 20, when patients and family members are invited to attend “Meet the Experts”, a FREE educational event. Frank McCormack, MD, will present and Joel Moss, MD, PhD, will lead the LAM round-table discussion. For more information on this event, click here.

This March, ATS promoted LAM awareness week to their membership on their website, that included a live webinar hosted in partnership with The LAM Foundation and the Tuberous Sclerosis Alliance. This year’s webinar was presented by Genetic Counselor Jennifer Glass, MS, LGC, CGC, from Cincinnati Children’s Hospital Medical Center. If you were unable to take part in the live webinar, click here to review her presentation, “Genetics in TSC and LAM”.

Air We Breathe Campaign Educates OB/Gyn and Emergency Room Physicians

As part of the Air We Breathe Campaign, Laura Bowers will attend the 2017 American College of Obstetrics and Gynecology’s Annual Clinical and Scientific Meeting in San Diego, CA, and the Society for Academic Emergency Medicine 2017 Conference in Orlando, FL. The goal of attending these conferences is to educate OBGyn and ER physicians about the new ATS/JRS LAM Treatment Guidelines. Obstetricians, gynecologists and ER clinicians are often the first to see LAM symptoms and, if aware of the disease, could shorten the time to an accurate diagnosis. Laura will wrap up her spring travels in Washington, DC, at the American Thoracic Society's International Conference to educate pulmonologists and respiratory researchers. To read more about Laura’s Air We Breathe Campaign, click here.

Travel Grants Available to Patients New to the NIH

The National Institutes of Health (NIH) is home to one of the most comprehensive and longest running LAM research studies. Patients with LAM from all over the world travel to the NIH to take part in this important LAM research protocol.

The NIH helps pay for patient travel to participate in the LAM protocol, however first visits are no longer covered. When LAM patient Becky Hobgood found out about this change, she wanted to help. Becky and her family created the Helen Green Travel Fund to provide research travel assistance. Learn more about how Becky’s family helped and how you can apply for a travel grant for your first trip to the NIH by clicking here.

Current Trials and Studies

LAMposium DC or LAMposium LA…or Both?

Registration for the International Research Conference on TSC and LAM & LAMposium DC opens April 3. Registration for the Patient Benefit Research Conference & LAMposium LA will open in August. Both conferences will offer unique educational experiences and a chance to connect with friends and interact with clinicians and scientists.

How will you determine which conference to attend: LAMposium DC or LAMposium LA...or both?
Let’s start with the basics, the dates, locations and registration:

Make Your Voice Heard at the Patient-Focused Drug Development Meeting on June 21

The PFDD meeting will take place on Wednesday, June 21, at the Hyatt Regency Washington on Capitol Hill. If you would like to take part in this meeting, but cannot attend in person, you can participate through a free webcast where you will have the ability to respond to polling questions in real time. 

Register here to participate either in person or by webcast. If you have any questions about this meeting, please reach out to Anne McKenna, Patient Services & Education Manager at The LAM Foundation at (513) 777-6889 or amckenna@thelamfoundation.org.

LAM Day on Capitol Hill

Join the LAM community for our first ever LAM Day on Capitol Hill. In conjunction with LAMposium DC, The LAM Foundation is requesting women with LAM, their family and friends to join us for advocacy training and to meet with congress members on Thursday, June 22, and Friday June 23.

In order to help plan for this important activity, Anne McKenna, Patient Services and Education Manager, recently joined the TS Alliance for their "March on the Hill", to advocate for LAM and TSC research.

To learn more about how you can participate at LAM Day on Capitol Hill and to read about Anne's experience ‘on the Hill’, click here.

LAM Family Network Grant Applications are Available

The LAM Family Network (LFN) Travel Grant helps women with LAM attend LAMposium. Thanks to the support from generous LAM Community donors and WWLAM fundraisers, more women will receive financial assistance to offset travel expenses to Washington, DC, and Los Angeles, CA, in 2017.

If you are a woman with LAM and want to attend LAMposium, but have limited finances, you can apply for a LAM Family Network (LFN) Travel Grant. The LFN Travel Grant only assists with travel expenses and partial hotel costs. Registration for LAMposium is free for women with LAM.

Applications for LAMposium DC must be received by April 30. If you have any questions, please contact Anne McKenna, Patient Services & Education Manager, at amckenna@thelamfoundation.org or (513) 777-6889.

Breath of Hope Gala DC on Saturday, June 24

Don't forget to pack your dancing shoes for the Breath of Hope Gala at LAMposium DC! Join us Saturday evening (June 24) with your friends, family and other women living with LAM to celebrate and raise funds for LAM research.

To learn more about this inspiring evening, check out the Breath of Hope Gala webpage at www.thelamfoundation.org/gala.
Are you interested in sponsoring a table at the Breath of Hope Gala DC, donating a silent auction item or supporting this event in another way? Contact Katie Jensen at kjensen@thelamfoundation.org.

LAM360 Grows Membership with New Blog

LAM360 continues to grow, with nearly 400 registered members and our newest addition: the LAM360 Blog. The blog serves as an educational tool for followers to read about what’s happening in the LAM community and to learn about the latest research and best practices for living with LAM. Click here to go to the blog, and check back often as new blog posts continue to be added!

To sign up for LAM360, go to https://www.thelamfoundation.org and click on the Register button in the upper right corner. Once you’re registered you’ll be able to ask and answer questions in the Questions and Answers forum, post comments on blogs and send messages to other members in the community.

If you have any questions about LAM360, contact Anne McKenna at (513) 777-6889 or amckenna@thelamfoundation.org.

Upcoming LAM Education Meetings

LAM Liaisons across the country are inviting women with LAM, family and friends to connect with each other and learn about recent advancements in LAM research and clinical care at LAM Clinic Regional Meetings. There are six upcoming regional LAM Education meetings from now to the middle of May. All of these meetings will have LAM Clinic Directors in attendance. You can obtain additional information and make your reservation to attend by clicking on the links below:

Learn More About LAM Events in Your Area

Guest Blog: 90’s Prom

Relive the “time of your life” at the 90’s Prom in Nashville, TN, on Saturday, April 8! Sara Lawler is hosting her first fundraiser for The LAM Foundation. Along with raising funds and awareness for LAM, planning this event is helping her cope with LAM. Read Sara’s guest blog on LAM360.

WWLAM: Worldwide LAM Awareness MONTH

Why promote LAM Awareness for just one day when we can do it for an entire MONTH?

The first Worldwide LAM Awareness Month (WWLAM), taking place this June, has two goals: to build awareness for LAM, and to raise funds for the LAM Family Network (LFN) Travel Grants. Check out the WWLAM webpage for all the tools you need to promote LAM awareness and raise funds for The LAM Foundation.

You don't have to wait until June to get started! Create a fundraising page, order a t-shirt, and start spreading the word about WWLAM today at www.thelamfoundation.org/wwlam.

Guest Blog: Have Bike, Will Ride for LAM

This year marks the Lu family’s fourth year of participating in Penn Medicine Orphan Disease Center’s Million Dollar Bike Ride to raise funds for LAM research. On May 20th, you’ll find the Lu family volunteering, riding, raising funds, and cheering on the hundreds of riders along the 12, 33, or 73 mile course. Katherine Lu Hsu loves participating in the Million Dollar Bike Ride because of the "challenge and community".

Learn more about why the Million Dollar Bike Ride and LAM research are so important to the Lu family in Katherine’s guest blog on LAM360.

Double the Donation

It’s now easier than ever to have your gift to The LAM Foundation matched by your employer! When making a donation online at www.thelamfoundation.org/donate, you can enter your company’s name and receive information about their matching gift program. If you’ve made a gift in the past year, click here to learn how you can double your donation. Thank you for taking the extra step to make an extra impact!