The FOD Family Support Group's online 'Communication Network' is

intended to be used as a resource for families, friends, clinicians, researchers and others who would like to support, educate and provide a forum for the sharing of ideas and concerns for those whose lives have been touched by a Fatty Oxidation Disorder. Family Stories are shared, questions are answered, nutrition information is discussed, and medical and pharmaceutical updates are offered. You can also view our current newsletter as well as our archive of past newsletters for more information and stories. If you have a comment, would like to ask a question, or you want to 'Register for the Group' (also places you on our mailing list) you may do so by contacting us via our online registration form. Our Email List (different than Registering for the Group) is also open to FOD Families and Professionals for support and networking purposes.

Subscribe to the FOD Family Support Group Email List

Email:

Visit this group [Create a google account before registering for our NEW List and please read our 'List Rules and Reminders' on the Join Our Email List page. If you do not respond to Deb's email (if I don't recognize your address), you will not be activated for the List. Keep in mind there is a possible delay of 12-24 hrs from when you sign up until you're activated for the List. Read further info below.] Main FOD Email List webpage: http://groups.google.com/group/FODsupport [Once you're activated for the Main List, you can also sign on for the various subGroups for MCAD,VLCAD etc from the webpage above] Main FOD Email List address: FODsupport@googlegroups.com

2008 Conference ~ Look out Pittsburgh here we come!

Conference Speaker Agenda as of 2.8.08 ~

Online Conference Registration Form and

PayPal payment [*you do not need a PayPal account

in order to use PayPal. All Registrants get a FREE tshirt ~ but you can buy extras via paypal.]

Online Hotel Reservations

Printed Conference Registration Form

[mail directly to Deb - address on the form]

FOD Photo Galleries ~

FOD Kids/Adults and 'Love Messages'

FOD Awareness Items & Projects

2006 National Metabolic Conference in Dallas

Dr Charles Roe, Deb Lee Gould (FOD), Dr Larry Sweetman, and Kathy Stagni (OAA), touring the Institute of Metabolic Disease during the 2006 Dallas Conference

NEW FOD Google Email List

As of Nov 20th, we have changed to Google Groups as a new Email Listserver. You can create a google account and then register for the List in the box above. Once I (Deb) activate you, you can participate in a great network! We also have 3 subGroups/Lists for various specific FODs.

If I am unfamiliar with your email address, I will email you ~ if you do not respond to my email you will NOT be activated. If you have not heard from me in 2-3 days, please email me at fodgroup@comcast.net or deb@fodsupport.org for assistance. Some addresses or servers are not receiving email from my deb@ address for some reason or going into spam/junk files. Please add my above addresses to your safe list before you contact me.

FOD Family Support Group Brochure

[updated 1.1.08]

'2008 Annual FOD Letter of Giving'

[This is the only official FOD Group project ~ no Family Project Awareness Form (as noted below) is needed if you choose to share this letter with others. Please Note: We do NOT email ANY mass solicitations for support so if you receive an email that looks like it came from me (Deb),

do NOT respond!]

Grief Support

for the Death of a Child or Loved one

[There is no charge for FOD Families or the public for consulting with Deb via email or phone. Donations to the FOD Group are definitely welcomed, however! The Grief Intake Form (best using Internet Explorer) will give me a better idea of your life situation and can be filled out online and submitted directly to Deb or you can print it and mail/fax it to Deb. Please be sure to either save or print the Form BEFORE you Submit it in case there is a problem with the submission. I do not want to miss anyone's request for support! If you don't hear from me in 1-2 days please email me.]

Family Project for FOD Awareness Form

[Please note that if you choose to plan your own creative project to help with FOD awareness, you are asked to sign the above Form and Agreement and mail or fax to Deb (pg 1 especially, pgs 2-3 are optional). This agreement states that you understand that the FOD Group is not sponsoring your project nor is it financially or legally responsible for your project ~ and that only you would get the tax deduction and donation receipt when a check is mailed to Deb. PLEASE make it known to whomever may 'donate' toward your project that they will NOT receive a tax deduction or a receipt from the FOD Group for their participation.]

•JUST ARRIVED ~ Custom made•

FOD AWARENESS RIBBON

In addition to our Awareness Bracelets, we are now offering a 3.5" x 7.5" static cling car 'magnet' which will cling to the inside of your window. It looks terrific and it will create awareness about our rare disorders, as well as expanded newborn screening! You can purchase the Ribbons by US check and Order Form or via Paypal (click the blue Awareness box on the right sidebar).

Comments from Deb (FOD Director): We have really grown over the last several years and we now have over 900 Families in our Group from around the world ~ please know that this Group is for ANY Family/Familymember that is dealing with an FOD ~ and that includes Families that are THANKFULLY being screened/diagnosed through the expanded newborn screening, as well as many of our Families that tragically experienced a death BEFORE any screening/diagnosis ever took place. I am hearing from some newly diagnosed Families that they were warned by a few professionals not to get on the internet and seek out Groups such as ours because 'they have nothing but horror stories' on the site ~ that is so far from the truth as far as our Group and website is concerned, that I feel the need to respond.

We are a LEGITIMATE Family Support Group that has been in existence for over 17 years** and we utilize the support of FOD MEDICAL EXPERTS to keep our information updated. We also access their assistance when trying to refer Families to specialists around the country and sometimes the world. And yes we DO have some tragic stories on our site ~ but it is ONLY because the children were NOT DIAGNOSED IN TIME (which should be at BIRTH!) and these stories are these Families' realities! So please keep their stories in perspective.

So if you are a newly diagnosed Adult or a Family with a young child, please KNOW that our Group is the ONLY international FOD Group dealing with these rare metabolic disorders and we are here for YOU!

•••We also have a very active Email List where families can connect with others for emotional and practical support. Please note: The Email List signup is DIFFERENT than Registering for the Group via the online form.

** Please note that as shown in the right sidebar, as of Jan 1, 2007, the FOD Group has moved from a personal family entity to a tax-exempt 501c3 corporation entity so your donations are finally tax deductible. Up until then we financed our efforts via our own personal funds, as well as those individuals/professionals that chose to give from 1991 to 2006 knowing their 'gift' was not tax deductible. Dan and I are grateful to all of you for helping us continue our efforts with your financial contributions and for your ongoing support for the benefit of ALL our Families! We have seen a TREMENDOUS response in donations now that we are a nonprofit ~ and we hope to be able to offer Clinical and/or Research grants as soon as we raise enough funds.

Notice to Professionals
Professionals ~ we are always seeking family-friendly articles on all of the FODs, so if you would like to contribute your knowledge and expertise, PLEASE do! Additionally, in order to provide our Families with updated and more specific information on whether you test for/diagnose, treat, and/or research FODs, please complete and email or mail our one-page Professional Questionnaire for FOD Referral Purposes. Even if you are already listed on our printed Professional List, we would appreciate your help in updating our files.

URGENT NEED for Medical Professionals ~ With more Families around the world being identified with an inborn error of metabolism our Families will need both Short and Long term Clinical Follow-up Care (possibly through Regional Metabolic Collaboration Centers) from knowledgeable and caring professionals. In addition to our Expanded Newborn Screening Advocacy, our Group is hoping to bring awareness to medical schools and other medical organizations and facilities the need for educating and training new Professionals (physicians, metabolic nutritionists, etc) in the field of Medical Genetics and Metabolism to treat our children, as well as our FOD adults.  

One of our main Fundraising goals is to seek donations in order to eventually offer grants to Clinical and Research Centers (US only) for FOD Clinical Training (physicians, metabolic nutritionists etc) and FOD Research. We have a PayPal link up on the right sidebar if you wish to donate to either of those Funds.

We NEED your help NOW and in the FUTURE so our children will thrive and grow into adulthood with the best of ongoing care!

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