Guild Announcements

The 2013 Cure for Mito Golf Tournament will be held Saturday, June 22nd, at the Heron Links 9 hole Par 3 course at Willows Run in Redmond, Washington. Click here for more information and registration.

Announcing the 2013 Mitochondrial Research Guild Small Grants Program. Application deadline is July 3rd. Click here for information.

Attention: Parents of Children with Mitochondrial Disease
One of our guild members, Brenda Senger is working on her doctorate degree in nursing and is conducting a research study on the experience of caring for a child with a mitochondrial disorder for her dissertation topic. We would like to support her in this effort and are asking that as many parents as possible take the time to complete a set of surveys specific to the needs of parents caring for a child with a mitochondrial disease (only one parent per household please). The set of surveys will take approximately 15-20 minutes to complete.

For more information about Brenda's survey click here. To access the survey directly click here. For additional questions about the survey or about Brenda's dissertation project, or for technical assistance please click here to contact, Brenda via email. Thank you for your support.

Check out the 2012 Seattle Children's Activities and Achievements Report for the Mitochondrial Research Guild (PDF Document).

The 11th Annual 'Cure for Mito' auction will be held on Saturday, September 28th. Visit our Auction page for auction item donation, sponsorship, and catalog advertising information.

Camp Korey has announced their 2013 summer camp schedule. Camp Korey serves children with serious and life-altering medical conditions and their families at no cost. This year there are multiple weeks that provide camper programs for children effected by mitochondrial disease. The 2013 application is available now and the application deadline is April 15th. Mito kids can attend one of several weeks this year but you should get your application in early to get a week that will work with your summer schedule. Click here to visit the Camp Korey web site for more information and to download the application or to apply online.

Place your order for "Give Kids the Energy to Dream" Sweatshirts. Click here for information and to place your order.

The guild would like to thank everyone who helped make this year's "Decade of Dreams" celebration and auction a huge success. We raised over $260,000 and matching donations should push the total over $270,000. The funds we raised are going in part to support hiring a nurse practitioner for Dr. Saneto as well as to set up a new grant program for providing assistance to families. We will also use some of the funds to continue to fund Pam Sligh's position at the hospital and we raised funds for our family care package program as well as Camp Korey. Thanks again for all your support. It was truly a great night.

We have updated the stories about our children with Mito.

New Guild T-Shirts Available

To read a "A tribute to Dr. Saneto" By Teri Rose click here (pdf)

The guild is very excited that Seattle Children's Hospital has now officially established a Program for Mitochondrial Medicine and Metabolism. This program provides care for children with mitochondrial diseases and metabolic disorders that affect mitochondria. Care for children with mitochondrial problems requires teamwork by many kinds of healthcare providers. The team of professionals available to help children with mito includes experts in neurology (with specialty in epilepsy), anesthesia, biochemical genetics (with specialty in inborn errors of metabolism), neuropsychology, neuroimaging, vision and eye movements, cardiology and gastrointestinal disorders.

Seattle Children's program combines expert clinical care based at Seattle Children's with cutting-edge research taking place at Seattle Children's Research Institute. Our clinicians and researchers work together closely. This is one reason we can offer state-of-the-art care and diagnosis and the latest treatments. These include new therapies being tested in clinical trials.

Do you want to make a donation to the guild through your annual giving campaign at work? Or, make donations directly to the guild or donate items for the annual auction? Please visit the donations page.

What is Mitochondrial disease?

Imagine a plant that is unable to make use of the sun and water surrounding it. Over time the plant will not function properly and will show signs of distress, its leaves will begin to wilt and eventually it could die. That is what happens to people with mitochondrial disease.

Everyday, we consume food to make the energy our body needs to function. If our mitochondria are not functioning correctly then the body's organs begin to suffer.

A person's brain can be impaired, their vision could become dim, their muscles can twitch spastically or they can become too weak to walk or write, their heart could be weakened, and they might not be able to eat and digest their food.

For large numbers of people, especially children, this is precisely the situation in which they find themselves due to defects in the mitochondria.

Depending on which cells are affected, a child can suffer from strokes, seizures, gastro-intestinal trouble, blindness, deafness, muscle failure, diabetes, kidney and heart trouble, developmental delays, immune system problems and liver disease.

Whole systems within a body can begin to fail and the life of the child is compromised, changed or ended.

Experts estimate that one in 2,000 babies may inherit some kind of mitochondrial illness and some experts are saying that the number could be as high as 1 in 1,000. 10% to 50% of these children will die before their teenage years.

Currently there is no cure.

Defects in mitochondrial function have now been linked to many of the most common diseases of aging including Alzheimers, and Parkinsons.

For additional information on how you can help please contact Tricia Bertsch at t.bertsch@nwmito-research.org or Steve Serex at s.serex@nwmito-research.org.