Posted on March 17, 2017 |
by Sue Sherman
Executive Director, The LAM Foundation
If you could ask an expert to solve your most vexing issue with LAM, what would it be?
The obvious answer to this question is: a cure. A cure would negate every other complication caused by LAM. Indeed, finding a cure remains our number one priority at The LAM Foundation. However, in the intervening years, we know there are many questions and issues that, if solved or addressed constructively, might improve each patient’s quality of life as we endeavor to overcome the final barriers to a cure.
What would make life better for you now: hour to hour, day to day, month to month, clinic visit to clinic visit? The answers you provide to this question will set the agenda and priorities for the upcoming “Patient Benefit” Research Conference, to be held concurrently with LAMposium LA.
It’s called “Patient Benefit” for two reasons. The focus of the meeting is to bring patients and experts together to identify the most important mental and physical health issues that you face every day, and develop plans to tackle those that can potentially be solved in less than five years. The second reason is our goal to raise necessary funds at the Breath of Hope Gala to support the most promising projects developed at the Patient Benefit Research Conference. Hence, a benefit to advance research into solutions that benefit patients.
Please take time this weekend to fill out this 10-question survey about your experiences with LAM and how it most affects your life. By doing so you will:
- Provide a first-person narrative (data) about life with LAM;
- Contribute to the design of the Patient Benefit Research Conference including topics addressed, experts invited, meeting format;
- Ultimately influence the development of shorter-term research projects that may improve life with LAM for you and your LAM sisters.
The survey is open-ended and meant to be thought-provoking. There are no wrong answers – just your answers. Be honest and thoughtful; we want to hear your voice. We will compile the answers and use them to inform our planning and priorities.
A version of this survey is also being sent to LAM clinicians to ask for their ideas.
LAM patients and clinician-scientists have proven that working together leads to progress and results. Be part of this next opportunity to change the future – take the survey, attend the conference, support the Breath of Hope Gala. New discoveries lie ahead when you get involved.