Crazier Things Have Happened: Stacy Webber’s new book supports our FOD Group

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!


www.staceywebbercrazierthings.com


You can also purchase on Amazon & Barnes & Noble & Balboa Press.

UPDATE: Our FOD Family MeetUp was June 24, 2023 in Bethesda, MD!

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 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. https://www.eventbrite.com/e/2023-fod-family-meetup-in-bethesda-md-june-24-2023-registration-168270953953
Here is a  Printed Regis Form for those that prefer to mail to me  – https://www.fodsupport.org/wp-content/uploads/2022/10/2023-FOD-MeetUp-written-Regis-Form.pdf
 
*Hotel Reservation link : The below 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.
 
HOTEL RESERVATION LINK: https://www.hilton.com/en/book/reservation/deeplink/?ctyhocn=WASBAUP&groupCode=FOD6&arrivaldate=2023-06-22&departuredate=2023-06-25&cid=OM,WW,HILTONLINK,EN,DirectLink&fromId=HILTONLINKDIRECT
 
**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 deb@fodsupport.org 517.381.1940

2020 FOD Regional MeetUp ~ Oct 24th in Hartford, CT ~ Virtual and Interactive!

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!

FOD Study Recruitment Update

UPDATE! FOD Study Recruitment: Patients & Families needed – refer to below and our  past Newsletters.

2023 MCAD Study ~

Children’s Hospital of Pittsburgh of UPMC Division of Genetic and Genomic Medicine is looking for patients 16 years of age or older with a diagnosis of Medium-chain acyl-CoA dehydrogenase (MCAD) deficiency to participate in a 10-week study looking at the medication Triheptanoin and its effects on fasting and reduction in blood glucose levels.

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.
 
If you are interested in learning more about this trial, please contact Elizabeth McCracken at 412-692-5662.