Posted on September 06, 2017 |
by Anne McKenna, Patient Services and Education Manager
Registration for the Patient Benefit Conference is officially open! The LAM Foundation staff is super excited about this conference, but we also realize the concept may still be unclear to many who might want to attend. I wanted to take a few minutes to help provide a better understanding of what it is and what you might learn by attending.
Where did the idea for Patient Benefit come from?
Medical research takes time, often a long time. The first treatment for LAM, for example, was nearly 15 years in the making. The concept for the Patient Benefit Conference came from a realization that there are daily issues affecting patients with LAM that can be solved in the shorter term, while we continue to search for a cure. The LAM Foundation wants to bring patients, researchers, clinicians and other thought leaders together to brainstorm about these challenges and try to find new therapies or products that offer benefits to patients living with LAM, and do it in the next five years.
How do we know what the problems are? Which problems are most important to individuals with LAM and their doctors?
To answer these questions, The LAM Foundation put together two surveys, one for individuals with LAM and another for LAM Clinic Directors. The response to both surveys was overwhelming with 250 patients and nearly half of LAM Clinic Directors responding. We asked questions to try to understand the challenges LAM patients and their doctors face daily, in their own words.
Some of the questions that were asked included:
What are the five most challenging aspects of living with LAM?
What is the most frustrating thing you deal with each day (or routinely) related to LAM?
What products, services or innovations could be developed to improve your life with LAM in the next 1-5
The answers to these questions fell into some pretty specific categories:
- Making oxygen easier to use and less burdensome on patients.
- Dealing with fatigue, how to cope with the disease and the effects LAM has on a patient’s mental wellness.
- Optimizing exercise as a way to stay resilient to LAM, without creating new problems.
- Understanding disease progression and being able to track their disease in a way that is helpful themselves and to their doctors.
We also asked LAM Clinic Directors the same questions. Their answers fit into the following categories (some of which overlap):
- Finding new biomarkers, creating a severity scale and identifying different phenotypes of the disease.
- Finding more accurate and better ways to perform imaging on LAM patients.
- Finding a way for patients to be able to track their disease and report back the doctors in a meaningful way.
We used this information to create specific workshops at Patient Benefit that will address each of these concerns. Our goal is to leave Patient Benefit with some ideas for solutions that will address the issues above.
How will the Patient Benefit Conference work?
We’ll start on Friday morning by bringing everyone together for an Opening Plenary session. Patients, researchers, clinicians and thought leaders will gather together in one room to learn, from the source, about the mental and physical challenges facing LAM patients every day. We’ll hear from several patients, as well as scientific and clinical experts who will tell us what these challenges are in detail and how they are currently being addressed. Following the Opening Plenary, patients and professionals will separate into more traditional educational sessions to continue learning about LAM.
On Friday evening, everyone will come together again for the Friday Evening Mixer where you will have an opportunity to talk in more detail and share your experiences living with LAM. Those who would like to further explore these issues and participate in the Solutions Workshops will have an opportunity to sign up to participate.
On Saturday morning, those who are interested will participate in our Solutions Workshops. These innovative workshops are designed to encourage problem-solving and brainstorming with the goal of generating proposals for solutions that will help address the challenges discussed on Friday. Each group will present the best ideas at the Closing Plenary session. These proposals will also be in the running to receive a grant from the Patient Benefit Grant Program.
Patients and family members will have the opportunity to participate in LAMposium educational sessions all day on Saturday.
On Saturday evening, we will close with our inspirational Breath of Hope Gala. All funds raised during Fund A Cure that evening will go to directly funding the Patient Benefit Grant Program and the research proposals presented during the Closing Plenary session.
Why should I attend?
The Patient Benefit Conference and LAMposium LA is going to be a unique opportunity for patients, researchers, clinicians and thought leaders to truly work together to find solutions to some of the mental and physical challenges facing individuals with LAM. Additionally, LAMposium LA is going to be an excellent opportunity to learn more about the disease, the research that is currently taking place and the treatment options that are currently available to patients. We’re excited to bring this opportunity to the West Coast for the first time.
The real question is…why wouldn’t you attend?
To learn more about the conference, to register for the conference and to learn more about the LAM Family Network Travel Grant program, visit https://www.thelamfoundation.org/conference.