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! Our face-to-face 2023 FOD Family MeetUp was on June 24, 2023 in Bethesda, MD from 8am – 5pm at The Bethesdan Hotel.
What a wonderful time for those that were able to make it this year! We did have some Families that had to cancel due to illness of a child and for other unexpected reasons, but having the smaller Group made it easier for EACH person to have more 1-on-1 time with our excellent Speakers!
I have posted the pdf Presentations below – they are already uploaded in our private facebook Group as well. If you’d like to join please request at https://www.facebook.com/groups/FODFamilySupportGroup and be sure to answer the 3 membership questions.
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.
2023 FOD MeetUp Agenda
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
The following Info from our 2023 MeetUp explains how we run our MeetUps ~ our NEXT EVENT will be a joint FOD/OAA Family Forum in Pittsburgh, PA on June 28-29,2024 ~ UPDATES SOON!
*No charge for Families to register. However, you are responsible for your own travel and hotel costs. We have some scholarships available (download form below) to help with those costs – you can complete this form online and then email to Deb. Contact me with questions.
*Anyone from anywhere is welcome – it’s not just for Maryland Families – but the MAX attendance is 75 and that includes children – all individuals age 5 and up MUST be Registered.
*FOD Family MeetUp Registration for Families (FREE) and Professionals ($25 each): Everyone age 5 and up MUST be registered in order for us to have an accurate food count. That includes a grandparent/sitter, that may be watching your child at ALL times in the Kids Activity Room. We most likely will not have volunteers to assist us so YOU will be responsible for watching your child/ren.
*As the Main Contact you can register up to 5 more individuals at one time. Megan McCarthy will be helping me with the Registration.
*FOD Family/Professional Registration link: When you click Register, you will see FOD Families at the top and to the right of that there is a dropdown so you can register up to 5 other people. Professionals can register on this page too for $25. Here is a Printed Registration Form for those that prefer to mail to me:
HOTEL RESERVATION LINK. This link is specifically for the 2023 FOD MeetUp. You can EDIT your Stay dates at the top of the page ~ Or you can call 301.652.2000 and state you are reserving a room for the FOD Support MeetUp on June 24, 2023. The Deadline for our $109 +tax/night pricing is May 30, 2023. We have a block of rooms a few days before and after our event so if you want to make it a vacation please do! Confirm the price for ALL your days. Let us know if the block fills up and we can renegotiate more rooms, if available, with the hotel. Cancellations must be at least 72 hrs before our event or there will be cancellation charges. If you know you cannot come after reserving a Hotel room or Registering for the MeetUp, please cancel BOTH the Hotel reservation AND the MeetUp Registration so we can allow others to register.
**This will be a smaller 1 day event, a little different than past 2-day Conferences, but the purpose is the same
**To provide opportunities to Network/Share/Support with other FOD Families, hear 3-5 Speakers on FOD topics (Dr Vockley and Dr Kahler have already said they’ll be there ( ie., speak, sit on professional Q&A Panel etc), and be able to ask them questions that would help you better understand your or your/your child’s FOD. We have commitments from Nurse Practitioner Lynne Wolfe, MS, CRNP, BC and clinical psychologist Carla Messenger Shuman, PhD. We will also have a metabolic dietitian, Nina Mickle, MS, RD,LD from Children’s Rare Disease Institute.
Looking forward to seeing you next June!
Deb Lee Gould
MEd Director, FOD Family Support Group
517.381.1940