I had an amazing time at this year’s annual FOD/OAA Metabolic Conference! I must start by thanking the wonderful Kathy Stagni for inviting me to attend! The FOD & OAA did a fantastic job providing families dealing with Fatty Oxidative Disorder (FOD) or Organic Acidemia (OA) with resources, information from an array of speakers from parents to professionals, and what may be most important of all, a chance to meet other families dealing with the same rare disorders.
I was privileged to speak with many of these families and meet their children. I met families from all over the United States, as well as Canada. An indelible impression was made on everyone by an amazing couple from Australia, who had met other families dealing with their son’s disorder for the first time. (our hearts & love are with you-you are never alone) I learned a great deal both as an advocate and as a parent of children with rare disease.
The importance of continued research and education for newborn screening was a hot topic. There were several parents who lost babies due to the absence of proper newborn screening in their areas. They did not die in vain: many parents had babies saved because of detections in the newborn screening process, available thanks to these brave families who shared their stories & advocated for the next generation. To learn more about newborn screening, visit www.cdc.gov/newbornscreening/.
The Coriell Institute for Medical Research attended to inform patients of their cell repository. From genetic counselor Tara Schmidlen:
“We collect blood samples and clinical data from individuals with rare genetic diseases and chromosomal abnormalities and make cell lines and DNA, which are banked and made available for distribution to researchers around the world. Scientists use these well characterized samples for a variety of purposes, including: the discovery of disease genes and their function, further study of known genes and gene expression, development of new genetic testing and development of potential therapeutics.”
(Further information can be found on our web site www.dare-to-hope.org or contact Tara directly at email@example.com)
An obvious favorite for the children with FOD was the pudding samples. Pudding samples? Yes! Samples of MCT Procal were made into chocolate and vanilla pudding, so I couldn’t resist giving it a try! It was delicious! MCT Procal is made for patients with fat malabsorption, long chain fatty acid oxidation disorders, type 1 Hyperlipidemia, malnutrition and chylothorax. More information can be found on www.VitafloUSA.com to bring to your doctor for advice.
Another notable sample was the So Delicious Coconut Milk, which surprisingly enough I had never tried before. It really did taste more like cow’s milk than coconut! So Delicious products are dairy and lactose free, rich in medium chain fatty acids, and frozen sweet treats are sweetened with agave. Visit www.sodeliciousdairyfree.com for more information about their wide array of products. Always consult with your doctor if you or your child has food allergies or a metabolic disorder before trying a new food.
Thank you so much to the FOD/OAA! The parents and professionals involved were incredibly open and welcoming! To learn more about the conference, its speakers and FOD and OA, visit www.oaanews.org and www.fodsupport.org .
Report From the 2010 FOD & OAA National Metabolic Conference
Emory Conference Hotel
By Gina Gareau-Clark
Executive Program Director
Dare To Hope Foundation