The FOD Family Support Group's online 'Communication Network' is
intended to be used as a worldwide 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. Additionally, we have videos (see below) on how our Group began and how FODs are newborn screened, diagnosed and treated.
As we continue to spread FOD awareness, knowledge and support via our extensive website and Email List, we have also recently expanded our Group's Mission to include face-to-face grief support ~ Deb now offers local (East Lansing, Michigan area) Grief Support for those that have been touched by a child/adult child's death from any cause. Fortunately, with expanded newborn screening taking hold in our country and several other countries, there will be fewer deaths associated with undiagnosis of FODs ~ however, there are still many others out in the world living with a loss from another cause that might benefit from extra one-on-one support.
Subscribe to the FOD Family Support Group Email List
[Please Register for the Group first(see below)
or there will be no List activation]
If you would like to sign up for our Email List please first 'Register for the Group' ~ if you just have some questions/concerns about FODs or the FOD Group, please contact Deb. Our Email List is only open to FOD Families and Professionals for support and networking purposes.
If you sign up after 8pm est you will not
be activated until 8am est ~
After 'Registering for the Group,' above,
Create a google account and then verify your email address before signing up for our List and please read our 'List Rules and Reminders.'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.
While you are waiting to be activated for the List, please read this past Editorial about some major concerns our Families have experienced during the process of being screened and/or diagnosed (ie., being told their child has a 'mild' case, how Families are told a screen is positive, etc). These are concerns that really need to be addressed and not dismissed.
If you have not heard from me (Deb) in 2-3 days, please email me at fodgroup@gmail.com 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.
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 mail/email ANY mass solicitations for support so if you receive an email that looks like it came from me (Deb), do NOT respond!
There is no charge for FOD Families or the public for consulting with Deb via email or phone [and locally I have temporary office space in an Okemos, MI medical complex to offer face-to-face consultations (non-denominational) with bereaved parents, or other adult familymembers, living with the death of a child/children of any age and from anycause, not just our disorders].
Donations to the FOD Group are definitely welcomed, however, but are not required! More info is on www.bereavedparent.com. If you would like to consult with Deb at her local office or for email/phone support, please complete the Grief Intake Form [submit online or print/fax].
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. This agreement states that you understand that the FOD Group is not sponsoring or soliciting funds for 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 single check is mailed to Deb made out to the FOD Group.
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 2000 Families and professionals in our Group (on mailing list) 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 19 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 pleasekeep 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 and to continue to provide our National Metabolic Conference every 2 years for Families and professionals.
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 Metabolismto 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!
FOD Cafepress.com storeworks best in Internet Explorer ~ not all products or the page show up in the Firefox browser
Searching the web with GoodSearch raises money for the FOD Group!
Search GuideStar's database of more than 1.7 million nonprofit organizations and donate to the FOD Group. You can also donate through Capital One No Hassle Giving Site.
Both Guidestar and Capital One No Hassle Giving Site accept 'anonymous' donations.
United Way donors ~ you can write-in the FOD Family Support Group (address above in Contact Us) Tax ID # 83-0471342
July 2008 FOD/OAA National Metabolic Conference was in Pittsburgh at the Hyatt Regency International Airport Hotel!
The FOD Group and the Organic Acidemia Association want to THANK Dr Jerry Vockley, one of our FOD/OAA experts, and the Children's Hospital of Pittsburgh, for hosting our 2008 Conference.
With everyone's help and donations we were able to offer this terrific opportunity.
