Second blog post – September 13, 2009

What is inappropriate and unprofessional for a 501(c) (3) to raise awareness?

In this time of the Internet – the methods used of it with any business or non-profit are still evolving…  The world is still adapting to new “definitions” for what is appropriate and professional…  The timing is perfect to take note of the criticisms our current President is getting about everything he decides to say or do.  I continue to say to those critics – be factual and present a fair argument – don’t just make a blanket statement that provides no reasonings that are based on truth and fact.

As a former student of UMUC (University of Maryland University College) where all of my classes were provided online – I must say that I encourage the creative uses to communicate messages for anyone.  My blog has been inspired by the evolution of the Internet in getting the message out there by many different types of businesses and non-profits.  “Tell a story”… and get people involved – is what I have learned is the best way to gain the needed attention to get the message out…

As a disclaimer, my use of this medium has been my own idea (other than a former college instructor – George Takacs – who encouraged me several years ago to become a blogger) and has not been supported nor encouraged by any other non-profit and/or researcher.  If this effort succeeds I will take my credit and if it fails – I will take the credit as well (as well as remember George’s encouragements as he taught several classes that I took).  Lessons will be learned and discussions will be started – so if it fails according to someone else’s standards – I will take the learning experience derived by it with me and consider it still a success…

So, the question is posed as to what is appropriate and professional for a 501(c) (3) organization – or – what is inappropriate and unprofessional?  In my view, it is essential for anyone representing an organization to be responsible and accountable for anything they say.  It is also not responsible for one to sit by and not respond to what they perceive to be inaccuracies.

I am a big fan of CNN and Anderson Cooper as he keeps them honest.  It is because of my inspiration of the way the news is reported on CNN that I had the courage to begin my first blog on this homepage.  If you say something is true be prepared to back up your statements.  If you make a blanket statement regarding a topic expect to have your statement questioned as you have not provided any specifics to explain your stand…

So many questions with so few reliable answers…

The main reason I decided to finally break my silence in this “fight” is that I finally had what I have perceived as misrepresentations of the disease presented to me on a platform/platter that gave me no choice but to present my concerns and disagreements on these topics.

This is NOT  “personal” as my concerns are directed at specific topics that have been stated to me in the past – NOT at the persons themselves who are making the statements.  Now as the statements are presented in documented formats (such as the Mystery Diagnosis TV show and in articles and on websites) – I am finally speaking up and presenting my arguments along with the citations of what was said and by whom.  I will do my best to refrain from any personality conflicts and will always cite my concerns and the reasons for my concerns.

I have received only two communications that contained negative feedback regarding my blog and comments posted on the newsobserver.com website.  An email from Wendy Chaite, Founder of the LRF (Lymphatic Research Foundation) that was copied to many physicians and researchers who have in the past supported my efforts and a phone call from the mom of the child represented in the Mystery Diagnosis show on Discovery Health Channel (D-HC).

As I said, the email from Wendy was sent to many people (which is why I am addressing this in this public format) and stated that she wanted me to remove her name as an advisor to the foundation and that what I posted on the homepage for the LYMF Foundation was “inappropriate and unprofessional” for a 501(c)(3) foundation.  Wendy gave no reason for her statement to explain her position.  That statement provides  insinuations and no specifics which disqualifies that argument.

Insinuations of what is inappropriate and unprofessional do not provide the information required to prove a point.  In my mind if I were to sit back and remain silent while strongly disagreeing with the issues I have addressed – my continued silence would be inappropriate and unprofessional.  It is clearer now than ever that it is vital that we get these discussions really started and that it is important to make people accountable for anything and everything that they say in a public forum.  As there have been too many obstacles holding back the progression of our mission – this blog will get everything out in the open and hopefully allow the entire community to move forward with full disclosure from my point of view.

Obstacles to the growth of the LYMF Foundation

Briefly, my history with Wendy Chaite goes back to when I first started the foundation when she contacted me and tried to convince me to allow her to take over the foundation as two foundations would detract from each other.  I do strongly respect Wendy and her efforts and the work that her foundation does, I did not see this as a viable option at the time and continue to believe that the LYMF community needs their own voice. 

Over the years I have seen a respectable growth by the LRF and do strongly encourage their continued growth as I do believe that the LYMF community can be served through that foundation as well.  My main concern in giving up a foundation specifically devoted to LYMF patients has been that as a very rare disease, LYMF would not be served best by  a broad topic such as lymphatic research as lymphedema (especially where it is concerned with cancer treatments) dominates the research and attention drawn to the foundation.  With the rarity of LYMF, I insisted to Wendy that we need our own representation.

I believe that Wendy continues to disagree with me and I do respect her for that.  I believed that we had an agreement that we would provide much needed counsel to our respective foundations as advisors.  I agreed to name Wendy as an advisor to the LYMF Foundation and placed her name on the website in 2005 – shortly after she contacted me.  Wendy has not provided any advice to the foundation other than her strong belief that we do not need another 501(c)(3) foundation separate from LRF.  As per her request, her name was removed from the list of advisors to the foundation. 

Wendy did name as a Director on the board of the LRF, Scott Goldfarb, in 2006 shortly after Scott, his wife Sandy and other Goldfarb family members made their efforts to discredit me at the first meeting for LYMF patients and doctors interested in learning more about LYMF in Cincinnati.

While pretending to join forces with me – Scott and Sandy did their best to exaggerate and emphasize my physical disabilities to the Wendy and all of the other attendees.  There were many contradictions in their seemingly covert attitude toward me regarding my physical limitations in front of other attendees but some that were very clear. 

The first action that I could not ignore was when they attempted to invite Wendy to lunch after our scheduled meeting that Friday.   They said to me that I did not need to come as they were sure I was tired and would want to go back to my room and rest.  It was very clear to me what their intentions were and I felt I needed to remain positive and to join them and hoped to stop what I perceived as a covert “Mutiny on the Bounty” as quickly and graciously as I could.

The final actions by the Goldfarbs was when they pulled me out (physically as I was in a wheelchair) of the most important talk of the meeting stating that I needed to turn the foundation over to them.  Scott’s mother and father were included in this attempted take-over all citing my health as the reasons.

I told them that the board meeting scheduled for the following day would be the appropriate time to speak about these issues and they insisted that the board meeting was not necessary and not going to happen.  When I told them they needed to provide me with a business plan to demonstrate their intentions and capabilities over mine – they told me that they did not need to do that. 

I told them that I would not hand over the foundation to them as they had provided me nothing that demonstrated they would be the right persons to take over the helm compared with the others – Wendy, Jack and Jana.  I kept no secrets from any of the parties and all were aware of each others’ interests. 
I will mention that my first contacts with Scott were similar to that of Jack and Jana in that he stated he had the idea first and went as far to tell me that I would be welcome to be a part of his efforts as he intended to move forward with his plans.

For those of you who ask the question why I did not just hand it over to them I will say that the formation of this foundation took many years and private, personal funds on my part.  I spent many hours not only taking classes to earn my degree – but also spent countless hours of time communicating with as many health professionals and researchers as I could find in order to get to the point when I met the Goldfarbs, Jack Kelly, Jana Sheets, and Wendy Chaite.  It would be irresponsible of me to hand it over to someone who does not show me some qualifications and plans on paper to move the foundation’s work forward.

The final sentence that I can recall from Sandy was that she was so glad that she would never need to hear the word “deadline” again.  The reason I bring this up is that I have had someone question whether I was moving too slowly for the other people involved with the LGDA.  The only answer to that question that I can come up with is that I was moving too fast for them.  Had their intentions been pure – we would be so much farther along now in reaching our goals.

There are many other stories that are not important to tell – these I am disclosing as I want everyone to know the major obstacles I have faced, the way I have handled them to the present time, and my reasonings and concerns.

The other negative communication regarding my blog addressed:

The mom of the patient from Mystery Diagnosis (M.D.) – “The Girl with the Hole in her Jaw” – had some valid points which I would like to discuss.  I stand by my opinion given the way the show portrayed her daughter’s disease – as “Vanishing/Disappearing Bone” disease – which is the definition of Gorham’s to my knowledge. 

My disagreement with the diagnosis as “portrayed” on M.D. does not in anyway take away from the serious nature of the child’s disease.  It also does not mean that I am right – as I have had no personal connection to the child’s medical care and a large portion of her medical records which mom says contain evidence and corroboration by several other tests and doctor groups. 

I discussed the diagnosis from what was presented to the world on the TV show.  Clearly the mom is confident that her daughter’s diagnosis is correct and I do realize that a 20 minute (after commercials are subtracted) TV show cannot adequately portray the many years that make up the full medical journey of a person with a very rare disease. 

I did not present the question to upset the child and parents of the child portrayed.  I presented it because it is a subject that needs to be addressed and discussed.  In a time when the disease is still being defined (especially for research) – it would be irresponsible and unprofessional of me not to address my concerns regarding any TV show and/or articles portraying the disease. 

Many physicians are aware that I still question my own diagnosis as my original pathology specimens were discarded many years ago and thus – the pathology of my disease is no longer well documented.  I have felt that the LYMF diagnosis is one of a “garbage pile diagnosis” and continue to believe that there are no proper guidelines spelled out to provide a “true” diagnosis.  This has been my biggest fight since 1995 when the LAM Foundation was created and NIH started researching LAM.

Clearly I have accepted my diagnosis as LYMF (although I still have some skeptical thoughts) – as I have presented – there are many more similarities with my history to a LYMF patient than a LAM patient.  I do share many commonalities with many of the LAM women (as do many LYMF patients as well).  The questions continue as there are many different types of presentations for LYMF patients that continue to bring up new questions every day.  To date – no scientific method has been used to answer any of these questions (that I am aware of)…  I invested much time and personal funds (as I stated earlier) in order to get the research started and intend to see it through. 

I encourage anyone to provide any negative feedback you have regarding my blog.  I ask only that you be relevant.  Do not make it personal and make sure that you are prepared to back up what you say with a clear path to the source of evidence.

I welcome any feedback – encouragement is nice – but I want to hear the negative as well…  There have to be people out there who may be able to prove me wrong on some of my statements – and if you can – please do it with the respect that I will give you when replying.  I promise to provide the needed “verifications” regarding my statements and that is all that I ask of anyone wanting to prove me wrong.  Please provide verifications for everything that you say.

I will mention that three of the many positive comments made regarding my blog were quite encouraging – one from Malaysia, one from New England, and the other from California… – “Kah Yau!” (Fight on!!! In Cantonese) – “I want you to be captain of my team!!!”, and – “Make more noise!!!” 

Of course, I would be remiss if I did not at this point say – Please – Donate Now to our foundation (but if you choose the other side – please feel free to donate to them) – just get involved!!!

This disease kills too many babies, children, and young adults long before they should die.  We have no idea of the real numbers and any use of statistical data in case reports are just “fudged” numbers as there is no actual reliable source to obtain the data required for reporting the actual numbers.  The disease has yet to have a clear definition as there are many cases of “lymphangiomas” and “cystic hygromas” at birth that are visible to the human eye when a child is born – and many of these cases are not counted in the LYMF cases.  With these issues – LYMF may end up being much more common that portrayed, in particular, if cystic hygromas are to be considered lymphangiomas (in utero vs. post birth).

I do not know that the disease process is not the same and thus have started counting many of these patients as well.   It is thought that those of us who present later in life have had these lesions inside of us (not visible to the eye) from birth.  This is what I have derived from many of my conversations with some of my doctors – but wonder – how can that be true?  Their case for this is that the technology has improved to be able to better visualize these “birth defects” and that is why they were not seen earlier in our lives.

A comment that I do not consider negative but may refute a question I had was presented on the Newobserver.com under the comment section of Jana Sheets’ article regarding the M.D. show that aired in that a ? physician involved in publishing an article regarding Jana’s “successful” lung transplant provided a citation of an article that was published last year regarding her transplant. 

I am glad to learn that her transplant has been “documented” which is greatly needed.  American Journal of Transplantation - 2008 Sep;8(9):1946-50 Successful bilateral lung transplantation for lymphangiomatosis. – Kinnier CV, Eu JP, Davis RD, Howell DN, Sheets J, Palmer SM. – Division of Pulmonary Medicine, Duke University Medical Center, Durham, NC, USA.

Unfortunately, this brings up more questions for me and should many who read it.  The title in itself states that the transplant is considered a “success”.  If I am the patient and still living today after any transplant done 6 years ago – I would say it was a success too.  My concern is – what are the criteria for a successful transplant? 

The criteria for what the Duke authors of the article are stated on the website as “survival beyond 4 years and stable lung function”. 

My controversial comments regarding this relate to my concerns for other LYMF patients facing this decision.  I have not spoken with Jana for many years.  When she agreed to work with me I had arranged to have brochures printed to help promote the foundation.  Jana agreed to be a patient profiled in the brochure and after the brochure was printed wanted me to have the fact that she was on oxygen removed.  In order to be printed the brochure went through many approvals – including Jana.  It was too late for this modification.

I understood her desire to present her transplant a success but for patient to represent a disease in a global format (as brochures have been sent to patients around the world) – it is essential that the portrayal is honest.  It is with this knowledge that I say that if this case is to be used to determine the potential for other LYMF patients to undergo a lung transplant – I have concerns regarding that type of success.  I have no personal knowledge of her current function but do see the photo of her continuing to wear oxygen post transplant and as the title of the article states – she is dying from LYMF and the second to last paragraph states that she has been urged to contact hospice. 

My heart goes out to Jana.  I truly hope that her status is not as bad as portrayed – considering that hospice is a short-term palliative care for terminally ill patients who are not expected to live more than 6 months.  As the leader of a foundation, however, I need to remain objective.  If I were a potential patient for lung transplant (which I am not) – I would have to wonder if this is the answer for me.  I have been aware for several years of another LYMF patient who underwent a lung transplant and did not survive and have known others who have discussed this option with their practitioners but have chosen not to have the transplant due to the high risks such an operation poses to LYMF patients.

I do understand that I am questioning a paper that has come out of Duke University – but no paper is beyond the realm of scrutiny and questioning.  This brings me back to a question posed by the mom of the child in the M.D. episode as she asked me who I am to question her daughter’s diagnosis – am I a doctor…  I told her that “No, I am not a doctor and never have pretended to be – which is a problem that I have had with Mr. Kelly”…

I went on to let her know that I do not have to be a doctor to question a diagnosis and the way it is presented…  A person’s title in life and degree earned does not mean they are not qualified to ask pertinent questions in order to clarify issues and make anyone (M.D., Ph.D., or no title) accountable for what they claim…

I am not a doctor… I do not play one on T.V… and I have never pretended to be one…

I have always been very proud of my role in the medical profession as an important member of a specialized team…  I have been mistaken as a doctor many times by patients and some doctors who did not know me as I had an important role in training cardiology fellows in echocardiography as well as attended many research meetings and conferences related to my field…

At anytime – when someone would mistake me as a doctor – I would make it very clear that I am NOT a doctor and I would clarify my role and title…  I did not see this as something to boast about as my concern for misrepresentation of my role has always been a major issue for me that I take very seriously…  It all comes down to ethics…

This has been a major concern I have had with Jack Kelly – current President of the LGDA – since the moment I met him 5+ years ago when he contacted me regarding the LYMF Foundation.  Not only was Jack providing “medical recommendations” on the Gorhams.dk forum (a small family that started a website for their son who died) regarding treatments, he made comments several times to me regarding his “expertise” in this disease and that he was so well versed in this disease that he is many times confused as a doctor even by doctors. 

I do understand patients’ desperate search for answers to this disease, but it is inappropriate for Jack, me, or any non-physician to provide medical advice to anyone.  Even a physician, cannot give advice without knowing more information about the individual patient.  At this time, there are only case reports that address different treatment potentials with no proven success. 

I am reassured that Jack has now clarified on the LGDA bulletin board that he cannot provide medical advice.  I do continue to have concerns regarding his representation of himself as I will explain below.
As I reviewed the LGDA website recently – I read an article dated August 20, 2009 - http://www.lgdalliance.org/en/news/Default.aspx?newsid=18 – where it is apparent that he continues to this day to brag about such a “distinction”…  The article, entitled “Woman battles rare disease, tries to help others” – by SAMANTHA FRANK  - Palm Beach Post Staff Writer – Thursday, August 20, 2009 – he is again quoted as stating that “"I'm sometimes mistaken for a doctor," he said.”  (Copied & pasted 9/4/09)

Why does this bother me?  Credibility is the only answer I can give to that question…  I have been very proud of whatever my role has been and I have never had any delusions of being a doctor…  I have never had any problem representing myself as the person I am and I have had enough confidence in my role to question any researcher (physician, Ph.D., or other professional) regarding their findings and the modality and methods used to come to their conclusions…

So I tell you that if you have a brain and the ability to ask questions as you sift through the things you hear and read – you too are qualified to ask the important questions and be a part of this discussion.  You are also qualified to provide answers to many questions that may be personal for you.  I will reinforce to everyone that this disease is not defined by a single patient and thus all of us will have variations and differences.  The “real” answers are unfortunately not out there for us at this time. 

YOU are important to finding the answers as research cannot happen without the patients, the doctors, the many different types of researchers, and of course – the money needed to conduct the research.  If a research study becomes available to you – I hope you take advantage of it.  In the meantime – you need to spread the awareness of this disease and get involved in getting doctors and researchers interested and involved.  If you can – raise funds or do whatever you can to support people who are trying to raise funds. 

I hope that you will choose the LYMF Foundation to support – and if you decide not to take sides and take advantage of both foundations that will not be held against you in any way on my part.  If you choose to support the LGDA – again – I will not hold that against you either – I just want you to be involved and get the balls rolling!!!  It has been too long in the making…

Finally, I do not claim to be the only person who can run the LYMF Foundation.  I cannot do this by myself.  My health is not as strong as it was 5 years ago when I started the foundation.  I have strong concerns about the future of the foundation if something should happen to me. 

I have remained open to the right person with the right qualifications who shares in my vision for the foundation and also shares in my ethical standards to either help or become the new CEO.  The right person will have the ability to be objective and understand the processes required to work with researchers, physicians, and patients.  Please remember this is not about me and it is not about any individual patient.  I cannot stress this point enough. 

If you are interested or know of someone who would be good for this job - please contact me via email @ foundation@lymf.org . Please know that there is no salary at this point in time as we do not have enough funds. Ultimately, I would like to see the foundation run as any respectable non-profit with as many paid positions as necessary but not too many that would eat up the research dollars needed to move the research process along.

In The News...

August 26, 2009

LYMF on D-HC Mystery Diagnosis???

Where do I begin? I would like to start by thanking the Discovery Health Network, the physicians from Wisconsin, the entire Mantey family, Jana Sheets and the LGDA (along with the NewsObserver.com - reference: http://www.newsobserver.com/news/health_science/story/1659598.html - Shining a Light on Her Own Rare Disease) for providing me this wonderful platform to get the discussions regarding Lymphangiomatosis/LYMF and its proper diagnosis started...

Let the Games Begin... (Wasn't it John McCain who said "Bring it on!!!"?)

I guess I could have allowed myself to get upset with my perceived misrepresentation of the disease on the show Mystery Diagnosis on August 24 where it profiled an 11 year old child (Claire Mantey) however; I take this as the best opportunity to set the record straight and bring on the controversy...

I am hoping enough people will care enough to either prove me right or wrong - which will result in the much needed research funds as well as academic/research interest to finally come to terms with this very rare and frequently fatal disease.

I could also have allowed myself to become very upset over my perceived falsehoods in the information Jana provided in her interview to the above referenced article - but NO - I am so happy it is funny...

I have finally been provided the perfect platform to air my concerns and disagreements in the methods used by the LGDA to further what I consider their own personal agendas... Yes... I am saying all of this and will say a lot more in the coming few days (given my health holds up...)

Many of you may wonder where I have been over the past few years. For those of you who have not followed the LYMF Foundation - I established it via the Internet in early January 2005... After having been disabled from LYMF for 6 years in 2005 - I finally had enough classes under my belt to feel qualified to begin the daunting task of starting a Non-Profit foundation in order to include patients like myself...

I was actually quite naive as I believed others would want to join in - not try to overtake my efforts and to prove me too "disabled" to be able to accomplish my goals... Sabotage was at least two entities' goals when I was able to gain the cooperation of the LAM Foundation to help us hold our first ever meeting in Cincinnati... More on this later - much... much... more!!!

Let me begin by answering the questions I posed - "Where have I been and what have I been doing?" I guess some may have thought that I gave up... That is not in my character...

I have had a very difficult 2 years (yes - I do admit I am fighting this dreaded disease and have been longer than Jana has been alive...) I suffered a spontaneous compression fracture of my T12 vertebra in January 2008 - but was still able to make it to California to attend the Gordon Research meeting on Lymphatics held there and sponsored (?partly or wholly?) by the LRF (Lymphatic Research Foundation)...

It was really quite informative and I did meet many potential researchers... The fractured spine though proved to be more than I could handle to continue to nourish myself and be able to deal with all of the "invisible disabilities" one suffers from such an injury. Yes... I do believe that the lesions in my spine from my LYMF were probably the cause or may even have been just a factor in an auto accident the year before that made me more susceptible to such a fracture. A muscle spasm from just getting to step down the first step of my staircase was the actual culprit that resulted in this fracture...

Well... My daughter and son-in-law took it under control and located an apartment for me that does not require me to ascend/descend any stairs last October...

Just as I think I am getting my life back - in March of this year - I was admitted to the hospital for a gallbladder problem that was the original cause? of my disability. Due to something called a coagulopathy and very interesting anatomy - the doctors could not remove my gallbladder and thus I have been able to live for nearly 10 years with this issue.

Now - if any of the LYMF patients/family members ever hear their doctors say "Do no harm" as a reason to not become too aggressive with you/your family member with LYMF- please pay close attention... Yes... we do want answers and we really want a "normal" life - but any life is better than being killed by your doctor...

I have come way too close to death over the past several months to be comfortable for me... I first almost bled to death in April (I lost the entire end of the winter and all of the Spring to hospitalizations and a rehab stay to increase my strength after the April incident...

I have felt since March that a doctor who is not my regular doctor and from a different hospital has held my common bile duct hostage since March when they did an ERCP on me and my regular hospital was on a code Red...

In June when I went for a third time to have that darned stent removed - he had a new piece of equipment called a "Spy Glass" and I could tell he was in competition with the other GI doctors to become the first qualified physician to use it... There was an applications specialist there to help him become qualified to use it alone...

I had called him prior to the procedure to let him know that my family was very concerned about these stents and the fact that I seemed to have started bleeding again (I have a long history of bleeding which again - I will elaborate on in the coming days). I told him that I wanted to be sure that the stent was not replaced when he went in there. He assured me that he would keep it out.

Well... of course... the SpyGlass did not work and I ended up with another stent in and I had to go back to him in order to have the stent removed (August 13, 2009)... Trust me I will be writing a book and have been planning it in my head over the past several years - but it may not be just one book as there is so much to tell...

Please understand that I have an extensive medical career background (Echocardiographer Extraordinairre) and never once compromised on the quality of care I provided my patients... My career was my pride and joy (next to my daughter at the time - since then I have become a grandma and any grandparents out there will know how I feel about my grandchild)...

Very long story ... short - to be elaborated on in the future book/blog/whatever I end up doing - the doctor did not heed my request to use caution with me regarding my coagulopathy and I came very close to dying 2 times in the past 2 weeks... My family was called to my bedside while I was on a ventilator to say Good-bye to me and you can only imagine the adrenalin rush I am feeling right now...

I am extremely ematiated at this point and very... very... weak... I am more determined than ever - though - to see the cause for LYMF research succeed.

Here is where I lay down the gauntlet and challenge not only the accuracy of the diagnosis for Claire but also the credibility of some of the information presented in Jana's interview...

It has yet to be corroberated/concluded that the "disappearing/vanishing bone" disease described by these doctors regarding Claire is actually LYMF but a possible cousin called Gorham's Disease... I challenge the physicians out there and researchers to come to a consensus regarding this essential issue when researching LYMF...

I also challenge Jana's statements regarding the fact that she is the "first-ever lung transplant" for LYMF... I wonder if Jana's doctors wrote a case report for her transplant? The problem with such blanket statements is that it should be qualified with the words "documented" or "known to her doctors" as there are so many of us out here who have not had case reports or any other type of documentation for our diagnosis as well as the treatments that have worked...

Jana and her father along with the Goldfarbs all know my concerns regarding longevity and responsible reporting and their lack of a need to back up their stated data was only a part of why I gave up the fight to keep them engaged with the LYMF Foundation...

Credibility needs to be built and earned and it cannot be done when inaccurate information is provided due to someone's opinion and not documented data... Jana also states that she is one of the oldest surviving patients with LYMF... I find that hard to believe since I have clearly come across a few patients in their 60's and 70's with this diagnosis... I myself am 55 1/2 years (hopefully young) - and have as I stated before - diagnosed prior to Jana's birth (36 years ago August 14, 1973).

I have no desire to hurt the cause - but cannot sit by quietly - as I know the misrepresentations that may be motivated to help the cause - but instead could only hurt the credibility of a foundation when found to be untrue... As I referred to my career earlier - I have an extensive career in research and understand the need for ethics, values, and objectivity in order to gain the credibility and support needed.

I am very glad that Jana has not given up but wish that she would see the bigger picture which is way beyond herself, Claire, the Goldfarbs' son, and me... No individual patient can define a disease and it is essential that we keep the greater cause in mind whenever we report stories...

That being said... I am very happy to be able to finally be able to come out of my cocoon and start to press forward - as my life came too close to ending in the past few months - I have too much to accomplish and see done prior to its end...

A lot more to come...

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.