As you know, WayTutuCute.com raises money for various causes throughout the year. We are dedicating the remainder of the month to raise money for a syndrome that you may not have heard of, but is close to our hearts.
In May 2007, at 21 months old, a friend’s daughter began showing symptoms of what they now know is Cyclic Vomiting Syndrome. Every 10-12 weeks since, Ella has episodes where she vomits profusely, gets extremely dizzy, gets in a conscious coma and sometimes has to be admitted into the hospital. Ella’s parents have been to the Cleveland Clinic in Ohio to see Dr. Dean Fishman, a chiropractor and also to Children’s Hospital Los Angeles to see Dr. Richard Boles. It wasn’t until November of 2009 – over two years later, that Ella was finally diagnosed with CVS. As a mother, I can only imagine how hard it must have been to go through those episodes without having any idea what was wrong or what could be done to stop them.
CVS is an extremely rare disorder and we want to help Ella and her parents in any way we can to spread the word. Each time Ella and her parents go to the hospital, they have to explain to the ER doctors and nurses what to do to help her get through the episode. They hope that by educating others on this disorder, eventually, someone will find a cure for Ella and the thousands of other sufferers. To read more about Ella, please visit her page.
We are working on a couple of ideas to raise money this month, including an auction that is going on right now on our Facebook fan page. 23 items are up for auction currently and 50% of all proceeds will be donated to CureMito!
CureMito’s mission is to establish and support a local center of excellence for the innovative research, treatment and education in mitochondrial disease and functional disorders. Their vision is to enable families affected by mitochondrial dysautonomia and functional disorders to benefit from the clinical treatment and labratory research provided by Dr. Boles and his colleagues and to raise money for the research needed to improve these existing treatments.
CureMito! is a non-profit organization that exists predominantly to establish, maintain, and promote a center of excellence for these, and other, functional and dysautonomic disorders, studied from the mitochondrial perspective. This center will be based in the Los Angeles Area under the leadership of Dr. Richard G. Boles, but will provide care to children and young adults from across the world who wish to come to the Center. In addition, this Center will perform important basic and applied research into the link between energy metabolism and the functional and dysautonomic conditions.
Their goals are to find better treatments for these conditions by combining laboratory and clinical research, and to help people now suffering from these conditions with innovative and effective therapies. No such center exists today, anywhere in the world. Please help CureMito to fund their research and find a cure! Visit their FB page for more info.
If you’d like to donate directly, you can do so by visiting http://www.curemito.org/.
