Stacey Webber’s new book, Crazier Things Have Happened, is her journey to motherhood through the world of infertility and other life challenges. She is donating $1 of every book sold to the FOD (Fatty Oxidation Disorders) Family Support Group, as a way to say thank you to Deb Lee Gould, and all she has done to support families. Her story includes “Joseph’s Story” which is what she wrote over 25 years ago and is still on the FOD website today. Today she has three boys, all with FOD, but never felt alone because of the FOD Support Group. We are truly all in this together! Thank you in advance for supporting her book and this group. And if you do purchase, please leave a review, Thank you from Stacey!
You can also purchase on Amazon & Barnes & Noble & Balboa Press.
THANK you to ALL of our generous Sponsors for our 2023 FOD MeetUp! They include Leadiant Biosciences, Reneo Pharmaceuticals, Berman & Simmons and Attorney Chuck Hehmeyer, Rare Patient Voice, FOD Group, Mimi Lee Hogan & Sean Hogan, Ellie & Paul Setser!
2023 FOD MeetUp Agenda and Speaker Presentations
For all who were not able to attend our FOD MeetUp on June 24, 2023 at The Bethesdan Hotel in Bethesda, MD, we have posted below the Speaker slides from their presentations, as well our Sponsors, Agenda and brief professional biographies.
Our Speakers shared their expertise and knowledge of FODs and related medical, psychological, nutritional, family, educational, and newborn screening issues. Families came away from the MeetUp with ALOT to think about, as well as the opportunity to connect with other Families dealing with many similar issues. They also had many opportunities to speak with our Professionals one-on-one and ask them a variety of questions.
Jerry Vockley, MD, PhD ~ Advances in Treatment for Fatty Acid Oxidation
Stephen Kahler, MD ~ Brain, learning, and behavior issues in patients with FODs
Nina Mickle, MS, RD, LD ~ The Parent/Child Feeding Relationship and the Low-fat Diet
Carla Messenger Shuman, PhD ~ Five ways to build resilience when you live with a chronic illness/disorder
Check out our new welcome kit! Great info for our new family members as well as any member who has been here for a while. Download the file.
OCT 24, 2020 in Hartford, CT ~ the FOD Group will hold our 1st FOD Group Regional MeetUp for our Families in conjunction with Rare New England (RNE) as the main host.
UPDATE as of Aug 1 – we will be participating in this Conference on Oct 24th!
As more info becomes available from Rare New England, I will post in the Group. This will be an INTERACTIVE VIRTUAL Conference versus an in-person one, as originally planned. Even though it will be a unique experience for us, it will have LOTS of great talks and Networking!
There will be a $15 registration fee for FOD Individuals to cover the costs of this new virtual format. The FOD Group will pay for a certain # of FOD registrations up to a max amt TBD. For instance, it may be the first 100 FOD registrants.
When you register you will pay the fee and then AFTER you attend the event Oct 24th, I (Deb) will refund that regis fee via PAYPAL. So anyone receiving the ‘FOD scholarship’ should have a paypal account – you can sign up for free.
The Regis fee for most or all FOD attendees will be covered because of a very generous donation from Kevin (34, MCAD)??
You can now register for the OCT 24th event at: https://www.eventbrite.com/e/improving-health-care-experiences-in-the-rare-disease-community-tickets-112491242334
Here are some of the Conference Speaker topics already planned – www.rarenewengland.org/RNE-Conference-2020.html
The FOD Group will have breakfast time Networking in our own ‘FOD room’ and then members can listen to all the planned Speakers before we gather for our ‘Lunchtime’ Speakers/Networking with Dr Mark Korson and Dr Michelle Spencer-Manzon. Both Speakers will share their expertise in regard to FODs and then do a Q&A time, then we will continue our Family Networking before returning to the main Conf room for the rest of the Speakers. Begin to think about and write out QUESTIONS you would like answered by our experts!
This is NEW and shorter 1 day vs 2 day format for our Group (refer to past FOD Confs https://www.fodsupport.org/category/conferences/) , but I HOPE members will plan on Registering to learn and be with others that are living and thriving with FODs!
Professionals ~ Please share your Expertise and your Research/Clinical work on our website! Professional articles or summaries on your clinical work or research [Drs, RNs, nutritionists, genetic counselors, social workers etc]. Contact Deb.
UPDATE! FOD Study Recruitment: Patients & Families needed – refer to below and our past Newsletters.
2023 MCAD Study ~
Participants must have a confirmed diagnosis of MCAD deficiency based on DNA sequencing and be willing to come to Pittsburgh three times during this period for an overnight admission to monitor fasting glucose levels and other metabolites for up to 24 hours followed by escalated dosing of study medication.
Participants will be asked to take the study medication 3-4 times daily as tolerated. Travel and a participant stipend will be covered by the study site.