FOD (Fatty Oxidation Disorders) Family Support Group

Amber about 1 month ago

My daughter is 3 months old and through 3 months of testing we finally found out the results today, that she has the varient form of MCAD. The newborn screens are what caught it and I am so thankful that our state does them, now we can prevent any problems before they happen! I'm glad there is a site for news & support!

Susan 4 months ago

Universal Newborn Screening...KNOWLEDGE is meant to be shared - If you are pregnant or know someone who is have them check this site http://genes-r-us.uthscsa.edu/nb... for tests performed, - or not performed. We can save lives by sharing knowledge.

Carolyn 5 months ago

Hi, my name is Carolyn, our story starts in November of 1998 when at two days of age we lost our beautiful little girl Shelbie Marie. They said we lost her from a heart defect. They did not have NBS then for FOD's. In March of 2007 we had another beautiful little girl named Haylie, who had a crisis at 16 hous of age and then again at one week of age. Thankfully our local doctor new something was not normal and had her flown to Stanford were her docotor there had the results in less than 24 hours. It was VLCADD. When her NBS came back it just confirmed what her doctor already knew. NBS saves lives and if we had know what had truly killed Shelbie, we would not have almost lost our daughter Haylie. Thankfully she is 2 and doing very well. We our also thankful that she has two brothers 15 and 7 who are heathly and do not have VLCADD.

Pamela 6 months ago

Hi, my name is Pam and my daughter Rebekah was born on November 19 2005. She was diagnosed with MCAD when she was just under 2 weeks old. Without ENBS she would probably not be with us today. We are blessed to have local hospitals where ENBS is madatory. I am excited to have found this group. I only wish I had found you all sooner. In the beginning there were so many questions that I just couldn't remember when we would go to visit her specialists at UT. I am happy to be connected with other families who have experienced or are experiencing the same things that our family is experiencing. I am looking forward to getting to know some of you on this page.

Doug 7 months ago

We have 2 boys that both have MCAD that was caught at NBS. They are 5 and 4. The NBS saved both of them.

Deb 9 months ago

thanks for posting your story kristin ~ THAT is exactly why ENBS is vital around the world! anyone else ~ don't hesitate to share stories, concerns, or pics ~ the wall and discussion posts are immediate but the media board pics come to me 1st and then i'll add them so there's a delay in posting. but don't hesitate to post your comments or concerns ~ that's why we are here.

Kristin 9 months ago

My son was diagnosed with VLCADD 10 days after he was born. He was beginning to sleep through the night, which was a blessing to us, but could have had tragic results for him. Newborn screening literally saved my son's life, too. Please support out cause.

Deb 10 months ago

THANKS to all our new members for the FOD Cause ~ this is terrific that you are spreading the word!

Amber 11 months ago

Wow this is great!

Amber 11 months ago

Wow this is great!

Gwen 11 months ago

Happy to see the FOD group up and running on the Facebook! Will rally the troops!

Gwen 11 months ago

Happy to see the FOD group up and running on the Facebook! Will rally the troops!

Deb 11 months ago

thanks kerry! to say the least it's been interesting to learn how to do this facebook format. but it's a great avenue for MANY to become aware of FODs and other metabolic/mitochondrial type disorders. on the Media Board i've shared a photo album of awareness items that can be found on our website (right sidebar), as well as some pics from our 2008 FOD/OAA National Metabolic Conference hosted by Dr Jerry Vockley and the Children's Hospital of Pittsburgh ~ both awareness items and our conferences are great ways to advocate awareness and spread the word. when individuals donate to the FOD Group Cause they will be helping us continue our efforts to support Families around the world via phone calls, our website and Email List, and our Conference ~ additionally we have 2 Trust Funds, one for training new Clinical Drs (we all KNOW we don't have enough medical professionals around the world that really KNOW metabolism!) and one for FOD Research. it'll be a few years before we raise enough to offer grants but we are on our way! so everyone get out there in your own way and spread the word ~ every penny donated will help our Families!

Deb 11 months ago

thanks kerry! to say the least it's been interesting to learn how to do this facebook format. but it's a great avenue for MANY to become aware of FODs and other metabolic/mitochondrial type disorders. on the Media Board i've shared a photo album of awareness items that can be found on our website (right sidebar), as well as some pics from our 2008 FOD/OAA National Metabolic Conference hosted by Dr Jerry Vockley and the Children's Hospital of Pittsburgh ~ both awareness items and our conferences are great ways to advocate awareness and spread the word. when individuals donate to the FOD Group Cause they will be helping us continue our efforts to support Families around the world via phone calls, our website and Email List, and our Conference ~ additionally we have 2 Trust Funds, one for training new Clinical Drs (we all KNOW we don't have enough medical professionals around the world that really KNOW metabolism!) and one for FOD Research. it'll be a few years before we raise enough to offer grants but we are on our way! so everyone get out there in your own way and spread the word ~ every penny donated will help our Families!