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! Needed for future Newsletters ~ 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 our most recent Newsletters.
Volunteers Needed: Newsletter Formatting, Family Fundraisers, Regional FOD Meet-Ups, Grant Writing ~ Contact Deb
One of our FOD family members, Rosemary Forrest, has co-written an exciting new book, Genetic Mistakes: Understanding and Living with Fatty Acid Oxidation Disorders!
She wrote this book “because I am one of you, a family member whose wonderful little grandson has an FOD (CPT2). When he was born, his doctor knew nothing about it, but got up to speed quickly. I know others have not been so fortunate. I looked for information and it was complex, confusing, contradictory, and frightening. I am a science writer and one of my daughters is a scientist, so we decided to do something about this for others.”
Excellent article honoring Dr Charles R Roe, one of our FOD research/clinical experts (retired from clinical FOD practice)!