Newly Diagnosed Patients

If you are newly diagnosed with LYMF or if you are new to the LYMF Foundation - please contact us via email or phone @ 410-433-2772. It is very important that we know that you are out there and can be counted in the number of patients in the world with this diagnosis.

We gain strength in our ability to encourage researchers and the medical community to take greater interests in helping our patients. Remember - as alone and helpless that you feel after being given such a rare diagnosis that no one knows anything about - the doctors feel just as helpless in treating you! We can't move forward without letting them know that you exist.

To date - September 26, 2007 - we currently have 65 patients registered with the foundation. We desperately need to learn more about all patients out there and how this disease affects them.

To help stress our urgency in developing our registry - we need to explain the worst case scenario...

What you need to know...

LYMF is a very rare disease with a poor prognosis. In the months of July and September - the LYMF community lost 3 of our youngest patients - ranging in age from 5 months to 10 years. The urgency grows to increase awareness and to encourage the medical and scientific communities to research Lymphangiomatosis.

This cannot happen without the resources of the patient registry which is the LYMF Foundation's highest priority at this time.

Additionally, please understand that in order for us to grow and motivate research that will give us greater hope of greater knowledge leading to more effective treatments and ultimately a cure - we need to raise awareness and financial donations...

Raising awareness helps physicians provide better diagnoses and better medical care for our patients. It also helps encourage research as more scientific professionals are made aware of the dire prognosis... Every little bit adds up!!! Please think about having family and friends designate the LYMF Foundation as their choices when making charitable donations.

The Lymphangiomatosis Foundation is a certified 501(c)(3) not-for-profit organization whose mission is to advance research of and to find the cause and cure of Lymphangiomatosis/Gorham's Disease.

All donations are tax deductible.

Online

By Mail

Alternatively, you may donate by sending a check or money order to:

The LYMF Foundation
C/o Sharon J. White
5400 Ready Avenue
Baltimore, Maryland 21212
 
We will greatly appreciate any and all donations and please be assured your donations are totally tax deductible.
 
Thank you in advance for your help in fighting this horrible disease. Please have your friends and acquaintances visit our page and encourage them to donate as much as possible. 

Please do not send cash.  Thank you again... very much for your generosity.