There is no foundation set up to raise money for research into SCLS. I considered setting one up three years ago, after recuperating from my first, devastating episode, but when I did some research of my own and spoke to a number of doctors about it, I realized that several basic things had to be attempted beforehand. Therefore, I’ve dedicated these years to, well, laying the foundations for an eventual Foundation.
First, I had to try to find and connect with as many individuals diagnosed with SCLS as possible, because I was told that no medical research could possibly be performed unless there were people to research – be it to carry out basic, scientific research or to try experimental, clinical treatments. At the time, we suspected that there probably were hundreds of SCLS patients around the world – but we didn’t know how to reach them because there is no national or international patient registry – except in Paris, France.
So, during the past couple of years, with the help of Dr. Greipp of the Mayo Clinic and other doctors, we have been putting SCLS "on the map" little by little, by including descriptions of this ailment on various medical websites, such as in NORD (the National Organization for Rare Disorders) and the Mayo Clinic’s own website, and also in a new pocket reference book for Intensive Care doctors, for the purpose of raising awareness in the medical community -- thereby helping to save lives and reducing the frequency and length of misdiagnoses.
The recent “Mystery Diagnosis” TV show is another example of how we have tried to spread the word about SCLS, and we are all grateful to Walt and his family and doctor for volunteering to tell their story to the world.
I have also tried hard to put doctors in touch with one another around the globe, to exchange tips, ideas, anecdotes, etc. that could help identify patients and help to keep them alive as long as possible. I have also encouraged doctors to write about their experience – good or bad – with various medications and treatments for SCLS, so we don't need to "reinvent the wheel" every time.
Then I started this "virtual community" in May 2008 to which dozens of SCLS patients and their relatives and doctors have flocked from all over the world, so that now we have at least a small sample of affected people who could be studied.
These efforts are why now you can actually do a Google search for SCLS and find dozens of useful references to this illness that didn’t exist a couple of years ago.
Then I decided to try and see if I could get some research into SCLS started without having to raise any money, and the obvious target was the federally funded National Institutes of Health, in Bethesda, MD. It’s a long story of how I managed that, but as you can learn from this site, there is a senior scientist at NIH, Dr. Kirk Druey, with a small budget, who during the past year has been doing some basic scientific research into SCLS on a part-time basis.
He has not made any breakthroughs as of yet, but at least he has obtained blood and other samples from over a dozen patients that doctors have referred to him and that have responded to a call for volunteers made through this website. He has since performed hundreds of lab tests to try to get some answers – or at least to eliminate some obvious, and not-so-obvious, hypotheses.
I am currently trying to persuade Drs. Greipp and Druey to run a clinical trial using IVIG to treat SCLS patients, because there is growing evidence coming from Europe, Canada and now the United States that IVIG works better than anything else at preventing episodes. However, this requires not only having access to enough patients, but also getting a pharmaceutical company to donate the IVIG needed for the trial, because it is a very expensive medication.
And the latest accomplishment is that Dr. Greipp has graciously arranged to have a very first presentation and discussion meeting on SCLS as part of a larger, Mayo-sponsored conference on hematological disorders, to take place in late August, which will be attended by some of the best vascular biologists in the world. I'm hoping that this will generate awareness and some more ideas and interest within the scientific community.
In sum, we may soon have enough good reasons to start raising money for a Foundation that could make a difference.