Urgent news about the Manuela Martinez Foundation!!!

Dear families of peroxisomal-disorder patients,
I must inform you about something extremely important. Last Thursday, June 17th, we held our periodical Foundation Board meeting, and the main donors informed us that they will not donate money to the Foundation any longer.

So, I am sorry to inform you that the financial situation of the Foundation is extremely critical just now. I estimate that the money it has at this moment will only last until August. This is very serious, indeed, as it represents that I will have to close the lab and my medical activity. It would be extremely regrettable, not only for the patients' care but also for the current research we are doing, which could lead us to a new treatment of the disease in the future.

I am also thinking on my succession. If I cease my activity at this very moment, nobody will continue my work in the way I am doing it. On the other hand, I found a University (International University of Catalunya) and an important hospital (Capio Hospital General de Catalunya), whose Director and pediatricians are very willing to collaborate with me, starting this very month. I am thinking on those as my successors. We are just arranging the documents, so that I can visit my patients there and share my knowledge about peroxisomal disorders with the other physicians. We have also jointly applied (together with the big hospital Vall d'Hebrón) for a grant about a new project on cystic fibrosis. Whether or not this is approved will be known at the end of the year and, if it is, the money (€200,000) will be given at the beginning of next year. This would represent a new gas chromatograph and the salary of a pre-doc to teach him/her fatty acid analysis and evaluation. This would also represent a great help for the foundation. All this would be lost if I have to suddenly stop working.

That is why, at this most urgent moment and before I have to close my activity, I must ask my patient's parents if you would agree to pay for my analysis and the DHA-EE treatment I provide. You know that I dislike this, but it would represent a great relief for my Foundation at this critical moment, and it would also help me to proceed my work until the end of the year, when I hope a paper on our current research will have already been published. The total price of the analyses (including plasma and erythrocyte PUFA, VLCFA, plasmalogens, phytanic and pristanic acid) is €625. Each DHA-EE bottle costs €10 (I maintain the old price, taking into account the unfavorable change of the dollar).

I would like to have a response from you as soon as possible. On behalf of all the patients, present and future, please, save the Foundation!!!

Best regards to all of you.
Manuela Martinez, MD,
PhDManuela Martinez Foundation forChildren with Metabolic DiseasesResearch