FOD (Fatty Oxidation Disorders) Family Support Group
Our mission is to connect and network with FOD Families & Professionals around the world and to provide emotional support and inform families of new info in screening, diagnosis, research, & treatment Learn More
Donate Fundraising: FOD Family Support Group
FOD Family Support Group
Your donation goes to support the core mission of:
FOD Family Support Group, a 501(c)(3) nonprofit
OUR CAUSE CONTRIBUTION:
$745
Top Fundraisers
|
|
$25 raised |
5 members donated
|
|
donated $100. 7 days ago |
|
|
donated $100. 5 months ago |
|
|
donated $25. 11 months ago |
2 members told their friends
|
|
posted to |
|
|
invited 3 friends. 16 days ago |
|
|
Recent Cause Activity
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!
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/nbsdiso... for tests performed, - or not performed. We can save lives by sharing knowledge.
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.
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.
We have 2 boys that both have MCAD that was caught at NBS. They are 5 and 4. The NBS saved both of them.
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.
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.
Updated: The cause has raised $500.
THANKS to all our new members for the FOD Cause ~ this is terrific that you are spreading the word!
Happy to see the FOD group up and running on the Facebook! Will rally the troops!
Happy to see the FOD group up and running on the Facebook! Will rally the troops!
It was frightening to hear our friends baby, a few days old was diagnosed with Mcad. Please help and support babies that go undetected for screening. You could save a life.