Sep. 14, 2015
TOPIC: Featured News
Posted by Lisa Sencen
1.) What does it mean to you personally to be a patient organization serving the rare community?
We bring hope to women who have Lymphangioleiomyomatosis or LAM, a frequently fatal lung disease that affects primarily women in their childbearing years. In 20 short years, The Foundation has played a vital role by cultivating a network of world class scientists interested in LAM and funding promising basic and clinical research. LAM research since 1995 has led to the discovery of the genetic defect that causes LAM, the first-ever treatment trial (MILES Trial), a diagnostic blood test that reduces the need for lung biopsy and the first FDA-approved therapy for LAM, Rapamune. The average life expectancy from the date of diagnosis has increased from 5-7 years to 29 years. More women have time to raise their children, love their partners and share many more years as daughters, sisters and friends.
2.) What do you find your patient community values most from your organization?
Our patient community values the knowledge, camaraderie and support that we provide. This includes:
- Raising awareness of LAM, its signs, symptoms and treatment to the medical and lay communities. We increase access to expert care and clinical trial participation by creating the International LAM Clinic and Research Network.
- Cultivating a network of world class scientists interested in LAM and funding promising LAM research.
- Establishing a Worldwide LAM Patient Coalition-which expands the network of LAM patients and health professionals across the globe.
- Organizing and maintaining a national LAM Liaison Patient Network in 21 regions throughout the US.
- Hosting an annual International LAM Research Conference and LAMposium with a patient and scientific dual educational track. It is the largest gathering of theLAM Community in the world.
- Keeping people connected and informed through print, social media, events and webinars.
2.) What are some of the challenges your organization has faced?
Some of the challenges that we have faced over the years have been:
- Finding and inspiring new researchers to take an interest in LAM. Spreading awareness about the diagnosis and treatment of the disease to critical healthcare providers such as emergency room clinicians, pulmonologists, radiologists, primary care practitioners and gynecologists.
- Raising funds for a rare disease that affects relatively few people.
- Building sophisticated infrastructures to manage databases, tissue samples, communications and registries.
4.) Whats been your most successful awareness campaign and/or fundraising event?
Our annual International LAM Research Conference, LAMposium and Breath of Hope Gala. Every year we bring together scientists, clinicians, women with LAM, family and friends to one location for these events. For two days women with LAM, family, friends, scientists and clinicians gather to learn about new research, managing symptoms, drug and integrative therapies, rare disease coping skills, etc. On the second evening we hold a Breath of Hope Gala where everyone gathers to raise money for LAM Research. The Breath of Hope Gala consists of silent auction, raffle prizes, and “Fund – A – Cure”, a live auction where everyone in the room raises their auction paddles to make a difference and raise money for LAM research. This past year, because of Fund – A – Cure, over $200,000 was raised for LAM research.
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Cincinnati, OH 45241 USA