Posted on March 24, 2017 |
by Anne McKenna, Patient Services & Education Manager
On March 1, I had the opportunity to participate with the Tuberous Sclerosis Alliance in their March on the Hill. On this day each year, the TS Alliance brings together advocates from all over the country to walk the halls of Congress, visit with their senators and house representatives, teach them about TSC and LAM and ask them to support TSC and LAM research through the Tuberous Sclerosis Complex Research Program (TSCRP). The TSCRP is a part of the Department of Defense budget and has been a major funding source for LAM and TSC research that has led to many breakthroughs. We need ongoing support for the TSCRP to ensure important LAM and TSC research continues!
I learned a lot of great lessons during my time ‘on the Hill’. I learned that my congressional representatives want to hear from their constituents about what matters to them. I learned that even though they may not understand what LAM is, they want to learn and want to help. And I learned that if you are visiting your representatives on the Hill, you should DEFINITELY wear comfortable shoes.
As we are holding one of our LAMposium conferences in Washington, DC, this year, the LAM community has a unique opportunity to meet with our government officials to teach them about LAM. We have the chance to help members of congress understand the struggles associated with the disease and explain to them how they can offer support and comfort to women suffering with this disease.
For the first time, The LAM Foundation will be hosting LAM Day on Capitol Hill. It will take place on Thursday, June 22, the day before LAMposium DC begins. We’ll start the day with an advocacy training lunch held at the Hyatt Regency Washington on Capitol Hill (the conference hotel) to make sure you’re comfortable and have all the information you need to talk to your congressional representatives. From there we will disperse to meet senators and house representatives and educate them about LAM.
I hope you’ll consider pulling out your sensible flats and joining me up ‘on the Hill’. You can register by contacting me at The LAM Foundation at (513) 777-6889 or email@example.com. Women with LAM, family members and friends are all are welcome to join us for this exciting and empowering opportunity to make our voices heard within our government!