Happy 3rd Birthday to the LYMF Foundation:

The LYMF Foundation was officially established in January 2005 after many years of planning and evaluating alternative possibilities to give LYMF patients hope for answers to the many unanswered questions about this disease.  Until then, there was no hope. 

It is urgent to accelerate our growth as too many patients given this diagnosis are dying while being given no answers and no hope for a cure.  The fictitious thought amongst many in the medical community is that there are too few patients to find an answer or to conduct the research that is much needed.

It takes hundreds of thousands of dollars to support research that is dedicated to finding effective treatments and ultimately a cure for LYMF.  The funds include salaries and benefits for the researchers in addition to the payment for tests and other necessary tools involved in credible research.

About the Biomarker Study - A First for LYMF patients...

We are happy and proud that we have finally broken the zero mark in published studies that have included LYMF patients.  A report on the first study including a group of LYMF patients can be found on the web at: http://www.sciencedaily.com/releases/2008/01/080110114457.htm .  The report is located under the study titled: “VEGF-D Serum Test” on the left hand side of the web page.  It states that the article describing the VEGF-D Serum test was published in the January 10, 2008 edition of the New England Journal of Medicine.  The report describes the findings that LYMF patients along with patients with other rare diseases that have been compared to LAM did not have the VEGF-D marker in their blood.  The end of the report provides the supporters for the study including the LYMF Foundation.

There are plans to continue to test LYMF patients in the longitudinal study.  Presently, only adults in the U.S. and Canada are qualified to participate.  The potential of using children in the future (as it is a simple blood test) has been discussed; although approval from the board that approves research has not been received at this time.

Donate for more research...

We would like to thank all who have donated to help fund research for LYMF. Please know that every dollar counts and we are gaining strength in our efforts to increase the awareness of LYMF (most importantly to the medical scientific communities) - but also the rest of the world's population.

As the biomarker study continues as a longitudinal study - we will help when needed for the acquisition of patients and blood samples. We have two additional studies that are in the discussion phase. They promise to help guide future research - which is essential. Please continue to give as generously as you can as the costs to pay for the basics can be extraordinary. It is the foundation's goal to have the two additional projects near completion within a year (February 2009). Financial resources to carry out the logistics of these studies will dictate our ability to make our goal a reality.

The LYMF Foundation is a certified 501(c)(3) non-profit foundation and all donations are tax deductible. For your reference, our tax i.d. number is: 34-2047213. Every penny that you donate will be spent on actual costs to conduct research. At this time - the LYMF Foundation has no salary positions - all work done for the foundation is on a volunteer basis. All personal expenses for travel and conferences by our board members are paid by them - not by donations as our priority is to get the research started. As we gain our momentum - this may change - but will be made completely transparent so that you know where your donations are being spent.

Donating is as easy as a mouse click away...

Can you say Lymphangiomatosis? 

We have made it easier for you since January 2005 when the foundation came up with the acronym LYMF.  Not only does this acronym help people pronounce the disease – it also helps to reduce the confusion of another very rare lymphatic disease – Lymphangioleiomyomatosis – which uses the acronym LAM for easier references to and differentiation of it.

The differences between the 2 diseases are the 2 middle syllables as well as the fact that LAM affects primarily women of child bearing disease and affects primarily the lungs, whereas, LYMF can have devastating consequences on the patients with that diagnosis but frequently affects many other organs as well as the bones.  LYMF is also frequently seen in children as well as young adults and is not gender specific.

LYMF has had no formal research until 2006 - 2007 when the LYMF Foundation helped support a study conducted by LAM researchers Dr. Francis X. McCormack and Dr. Lisa Young from the University of Cincinnati.  Although it is a baby step – it is a major step in getting research started for a disease that kills children and young adults and has had no formal research until now.