Study with fish oil

Hi Catherine,

I work for a company called Transforma AS in Norway. Our affiliate office in Italy, is the distributor on the Italian market of a fish oil called Norwegian Fish Oil Liquid Omega-3. Some time ago we were contacted by a medical scientist who informed us that he had chosen "our" fish oil for a study on Rett. He had chosen it for its purity (no dioxins, or heavy metals), high quality and thorough documentation. The product is registered with Italian Health Ministry (similar to FDA), which goes for all of Europe. We were thrilled to hear about the study and we have followed it closely. Even though we hadn't heard about Rett Syndrome before dr. de Felice contacted us, we have come to care about Rett girls and have shed happy tears every time we have heard about the positive results achieved. The scientists behind the study also care about the Rett girls, they have dedicated much of their life for the rare disease. The study was published in March this year.

There is no financial link between dr. Claudio de Felice, his team, or ourselves, so this is not a "bought-and paid-for" study.

The study is titled Partial rescue of Rett syndrome by ω-3 polyunsaturated fatty acids (PUFAs) oil and shows improvement in sitting, ambulation, hand use, language, non-verbal communication and respiratory dysfunction for Rett girls. It has been published in a well-renowned medical journal, Genes & Nutrition. Link to study: http://www.springerlink.com/content/r7m28827600264g5/ Please take the time to look at this amateur video filmed by parents of Rett girls: http://www.youtube.com/watch?v=4yQSEgeWK5Q&feature=youtu.be

We have sent information about the study to a number of organizations for Rett Syndrome, but most of them don't even write back. (One exception is the British one, they will write about it in the members' magazine in August.) The organizations focus a lot on "funding research", so we are very surprised that when they are presented with a study which has already been done, without anyone's help in funding, they don't pay any more attention to it. We would have loved to participate in New Orleans this summer, but are unfortunately unable to do so, so instead we are inserting some information in the Program Journal. Also, we try to inform people such as yourself, directly. We only want as many parents as possible to know about the study. In Italy, more and more Rett families use the fish oil, and we have a lot of positive feedback from them. They have also achieved subsidies from the health security system in Italy, because of the documentation of the effect. The hospital Le Scotte in Siena, where Dr. de Felice works, of course also recommends the treatment to all the Rett patients there, so we know that girls of all ages use it, not only the Phase 1 girls, which were part of the study. Here is just one testimonial: I would like to share with you that my daughter Giorgia is four years old and has been taking Norwegian Fish Oil for approximately a year and a half. Thank heavens for the recommendation by Dr. Hayek in Siena. I can inform that her eye expression, her attention and her movements have improved, although it almost makes me fear that by writing this I break an enchantment. For about six months, Giorgia has been walking with a wooden walker, and for the last month or so she has been able to make a few meters on her own. She is also more present, and even though she doesn’t speak, I can see that she is trying to communicate by making sounds. For the records I must add that she gets physiotherapy three times a week, once a week we take her to the pool, once a week communication training and twice a week therapeutic horseriding thanks to her grandparents. Mario Gallo

We are a bit frustrated by the lack of interest, because no Rett girl will get any benefit from the study if her parents don't let her try this particular fish oil. The oil is called Norwegian Fish Oil Liquid Omega-3. It is easy to take, very neutral in taste, and most parents mix it with food. Please visit this website for more information: www.mamut.net/TransformaEurope Since in many countries the product can't be bought in pharmacies, we have set up this webshop as a service specifically for Rett families. Primarily for Europeans, but for customers from the States we can check the transportation cost and give individual price quotes.

I hope to hear from you regardless of what your opinion is. Our goal is better health for Rett girls. The niche of Rett is small, so it is not a big commercial profit that drives us. One of the reasons why I contact you directly, is that you don't seem to have given up, and you seem to be the type who will share any positive information with others. It is important that Rett parents get to know about the study.

Sincerely,

Hilde Midttømme

Transforma AS, Oslo, Norway
Tel +47-24 10 28 46Products for a better day