Scroll
To Top

Sep. 14, 2015

TOPIC: Featured News

The LAM Foundation

Posted by Christina Jensen
NORD-member.spotlight-The.LAM.Foundation-logo.

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.

Address

4015 Executive Park Drive, Suite 320
Cincinnati, OH 45241 USA

Phone

5137776889

Fax

5137774109

800 Number

8772873526

NORD is happy to be putting the spotlight on The LAM Foundation this week. You can look forward to social media posts on our Facebook and Twitter accounts about The LAM Foundation throughout the week! Member Organizations to NORD interested in Member Spotlight should contact their regional membership managers at NORD to learn more! 

5 Responses to “The LAM Foundation”

  1. Angelia Cholula says:

    I no I am dying

  2. Wanda Moreno says:

    My daughter was Dx.with Lam disease 2 days ago am I want to help her n the foundation she is 32 n has 4 kids we r new to this fatal disease. Please mail me information how I can help raise funds for Lam please write me 8437 Gravel circle apt 16c Tampa Fl 33615

    • Christina Jensen says:

      Hi Wanda,

      We spoke with the LAM Foundation and they would be happy to discuss this with you over the phone. You can reach the foundation at 513-777-6889. You can also email their Development Director, Katie Jensen, (kjensen@thelamfoundation.org) directly for more information on fundraising. The foundation also said that their Patient Services Manager, Anne McKenna, would love to speak with your daughter to discuss her diagnosis and provide her with more information and resources on the disease.

      I hope that you find this information to be helpful.

  3. Talia says:

    My sister is end stage. Now what? How does this end? 🙁
    Diagnosed 8 years ago.

Leave a Reply

You can use these tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>