The LYMF Foundation

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

NEWS:

First study to include LYMF patients published in the New England Journal of Medicine... Read more...

Can you say Lymphangiomatosis? Then just say LYMF...

The story behind the acronym...

From the heart of Sharon J. White, President/Founder
October 3, 2007

Over the past 2 months we have lost 4 of our youngest patients. Dyan (10/years), Luca (4 years), Dominick (5 months), and Chelsea (4 years) lost their brief battles with Lymphangiomatosis over the past 2 months.

These precious losses give us greater motivation to build the foundation into one that will effect change in the awareness and pulling physicians and researchers to study this devastating disease.

Each of these children was born apparently healthy. You can only imagine how devastating it has been for their parents and families. The helplessness they have felt has been tragic as even the doctors treating them had never heard of LYMF before they encountered these children.

The thoughts are that there are not enough patients out there to study. If you take a moment to think about science and statistics – when you lose 4 children from the same diagnosis within a 2 month period – the likelihood is that there are at least 24 patients per year that are dying from this disease.

The patients I have mentioned are only the few that have found their way to our foundation. The fact is that this disease has not had a registry – and thus – there are so many that are not even known about.

My heart breaks every time I hear of a new child and young adult who lose their battle with this disease. I am forever grateful that I have survived over 34 years with this diagnosis. There are very few patients that I know with histories such as mine who survive into their 50’s.

The biggest question I have is “Why?”. We need more information in order to build the foundation into one that can successfully attack this tragic disease. We also need funds to build the needed database; and also need funds to attract the scientific community in that we will be able to fund research.

Website upgrade

From Sharon J. White - President/Founder

Our new feature that allows patients to have their own Web Page is now functional. Please Click here to learn how you can have your own page...

As of August 14, 2007 - we have our first patient page posted. A new link tab will be added to our menu above in the very near future. To new patients and parents of children with this disease - it is important for you to understand that this is a memorial page for a child that recently lost his battle with this disease. To view this page you may click here. Click Here

It is essential that you understand that this is the most feared outcome of this disease - but not the only outcome. The patient's story reinforces the urgency for us to pull together all of our resources (information and fundraising) - so that we can urge researchers to explore this disease to find effective treatments and ultimately a cure...

You can read about Luca Zieren at: Luca Zieren - Memorial Web Page

We will have two sections for patient pages - one for patients who are still battling this disease... and another for the patients who have lost their battles.

Please think about submitting your/your child's information so that we can get to understand the different journeys each of us goes through. It is so important for anyone interested in learning more about this disease to have the stories of our different patients.

Please go to: Click here and contact the foundation at: PatientPages@lymphangiomatosis.org

Update - Biomarker Study

Update - July 10, 2007

The number of patients responding to this study has been encouraging. This does not mean that there are enough patients (there are never enough with LYMF) - but - there are enough to pique the researchers interest in LYMF and their desire to learn more.

If you have not yet contacted me about this study - if you are 18 or older - please contact me and learn how you can participate. This is a start and a big chance for us to gain the recognition from the scientific/medical community that we so need!!!

If you are new to this site or have not yet read the information regarding the Biomarker Study - please read previously posted information below:

As I posted in March - Dr. Lisa Young at the University of Cincinnati is conducting a study with adult patients diagnosed with LYMF. The study requires a blood sample that can be drawn whenever you have blood drawn. As I mentioned this is an excellent opportunity as it is the first study ever that will include LYMF patients (over the age of 18).

Dr. Young has contacted me and informed me that she has heard from 4 "eligible" patients - so far - with 3 having completed the requirements (including myself). She stated that there was one who contacted her but has not completed the requirements - which include sending her a signed consent form.

As I mentioned previously, there is a potential to include patients under the age of 18 in the future. She also mentioned to me that several parents of young children expressed interest in having their children participate, but - that their study is only approved for age 18 and over at this time. She stated "Certainly we will consider how to expand to learn more about how this disorder affects chidren in the future."

Please take this as a road for us to follow and if you are over the age of 18 and live within the contiguous United States and Canada - I strongly urge you to think about participating. We need at least 18 patients (and of course as many patients as possible - as any patients over the 18 will help demonstrate that this disease does occur in more patients than the literature demonstrates).

Please contact me and I will provide the contact information.

Patient Registry - A database that will collect information from patients diagnosed with Lymphangiomatosis and/or Gorham's disease is essential in raising the interest of researchers to search for a cure. Without a significant sized "pool" of patients to study - scientists are not able to conduct any reliable studies. When the database is complete (this has been an enormous job) - we need everyone to participate. Most researchers and physicians are under the misconception that there are only 5 or 10 patients out therer with this diagnosis. Clearly there are many more - and we need to provide evidence to prove there are more of us than they imagined.

New - LYMF Patient Community

The LYMF Foundation is in the process of developing a forum by which patients will be able to communicate with each other.

Additionally, the foundation is providing a special area of the website devoted to patients who wish to have their own Web Page on the website. This will provide a tool for patients to get to know each other.

Click here to learn more...

The LAM conference (in April) was an excellent experience - not only for me as a LYMF patient - but also - for me as a person dedicated to building a similar foundation and encouraging the scientific community to include LYMF in their research.

Please check out the LAM Foundation's page regarding the topics presented at: http://thelamfoundation.org/LAM_PatientPresentations.htm