MITO SISTERS
raising awareness of mitochondrial diseases by two sisters who suffer from mitochondrial disease
raising awareness of mitochondrial diseases by two sisters who suffer from mitochondrial disease
dr. Fabrizio Salvi, Head of the Centre for Rare Diseases and Neuroimmunitarie, (il Be.Ne.) Bellaria Hospital, Bologna, He’s the first neurologist to support Zamboni in clinical trials on MS patients, as well as the leading expert in the neurological ccsvi’s assessment Sassari, Sardinia c/o Hotel “Il Vialetto” – Room “Piazza dItalia” april 24 2010 Translation edited by Angela Cleary Speakers: Prof. Paolo Zamboni (University of Ferrara) CCSVI in Multiple Sclerosis Roberto Galeotti (University of Ferrara) Liberation Treatment Fabrizio Salvi (Bellaria Hospital, Bologna) Neurological aspects after the Liberation treatment Moderator: Gian Tomaso Marchio (President of the non profit Sa.SM)
CheckOrphan NewsFlash for Monday, January 11, 2010: breaking news about rare diseases, orphan diseases, orphan drugs, and neglected diseases. Today’s broadcast highlights topics about: Johns Hopkins Children’s Center, H1N1, Johns Hopkins, sickle cell disease, asthma, HIV, Swine flu, H1N1 treatment, tuberculosis, birth weight, Johns Hopkins Kimmel Cancer Center, leukemia, chronic myeloid leukemia, Imatinib mesylate, Gleevec, CML patients, leukemic cells, cancerous cells, Clinical Cancer Research, antigens, FACES, National Craniofacial Association, craniofacial deformities, birth defects, Ride 4 Smiles www.faces-cranio.org checkorphan.getreelhealth.com www.checkorphan.org
I’m a late bloomer(didn’t reach puberty until 23) at 23 because of a rare disease and he knows this. He also knows that I am physically and emotionally attracted to him because I told him. The sexual and emotional attraction has been too strong to bear and I told him that I need a lot of space for awhile to protect him from me since I don’t trust myself.
He said that he agrees with my reasons and it’s a good thing that I am gaining a better understanding of myself.
THat’s a good thing right?
He’s pretty rare right? I mean most guys would jump a girl like me right(I don’t want him to because we both believe in saving it until marriage. He’s single 29 and a virgin).
Anyway I’ve asked on here and my Christian friends how to deal with these new sexual feelings. They said to get off of them right away! Wtf?? When I ask secular people they are happy for me and tell me how to deal with it!
Do Christians want me sad and depressed and suicidal and mad instead of being normal and healthy and happy?? I don’t get it!!
Also I’m not constipated anymore and I can easily gain weight. Also I no longer sleep for 12+hours anymore.
God won’t help me on this. He works through doctors.
I’m a Christian too and yes I rely on Jesus but I doubt he’d rather I be suicidal and crap than be healthy and be on the birth control. I do believe in saving myself before marriage.
I am extremely modest and I’m not alone with any guy anymore.
Dr. Ryszard Kole is a researcher whose work led to a discovery that splicing provides a novel target for gene based therapies of numerous disorders including rare genetic diseases and metabolic disorders. Hear his views on the importance of bridging patients and researchers to advance research in the field of rare diseases. About Dr. Ryszard Kole Dr. Kole is a pioneer in the use of oligonucleotides for the modulation of splicing. He received his Ph.D. from the Institute of Biochemistry and Biophysics of the Polish Academy of Sciences. As a postdoctoral fellow in the laboratory of Dr. Sidney Altman at Yale University, he provided early evidence that an RNA component is essential for the activity of a tRNA processing enzyme, RNase P. Subsequent discovery that RNase P is a ribozyme was recognized by a Nobel Prize for Dr. Altman. After joining the Department of Pharmacology at the University of North Carolina at Chapel Hill as a faculty member, Dr. Koles work led to a discovery that splicing provides a novel target for gene based therapies of numerous disorders including cancer, genetic diseases and metabolic disorders such as obesity. He is currently participating in developing this technology into treatment for DMD at AVI Biopharma. More info: www.rarediseaseday.org