|
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.
|
|
|
Subscribe to the FOD Family Support Group Email List
|
If you have questions or you want to sign up for our Email List please first 'Register for the Group' ~ if you have further questions/concerns please contact Deb. Our Email List is only open to FOD Families and Professionals for support and networking purposes.
After 'Registering for the Group,'
Create a google account before signing up for our 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.
We also have 3 subGroups/Lists for various specific FODs.
If you have not heard from me (Deb) 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.
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 FOD/OAA Awareness Quilt
[Quilt squares still accepted ~ contact Gwen]
2008 Conference Speaker Agenda and
Speaker Presentations
Group picture of FOD members attending the
2008 Conference in Pittsburgh!
FOD Photo Galleries
FOD Kids/Adults
'Love Messages'
FOD Awareness Items & Projects
2008 National Metabolic Conference in Pittsburgh
2006 National Metabolic Conference in Dallas
[photo release form]
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
FOD Family Support Group Brochure
[print on 8.5x14 borderless and doublesided]
'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.]
Comments
from Deb (FOD Director): We have really
grown over the last several years and we now have over 1000 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 almost 18 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!) or the Emergency Protocol wasn't followed by medical professionals (see comments on the Medical Info page) 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.
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!
Top
|
