FND Hope US and CAN Virtual FND Peer Group for those diagnosed with Functional Neurological Disorder, including families, friends and care partners.
Open to those in the United States and Canada
1-2 pm Eastern Time
12-1 pm Central
11 am-12 pm Mountain
10-11 am Pacific
L-S Baseball Booster FND Hope Fundraiser
The L-S Baseball Team and Boosters will hold a fundraiser, Silent Auction and Awareness Night for former players and now coach who was diagnosed with FND a few years ago.
The L-S Baseball Team and Boosters holds a fundraiser every year and thought it appropriate to honor him along with all patients that are afflicted with this disorder.
A big thank you to L-S Baseball Team and Boosters from FND Hope!
This is an online event hosted by FND Hope. Jon Stone will answer questions from online attendees. Registration is free and open to anyone.
FND Hope is pleased to notify our members of the new online international FND sleep survey. The study will look at sleep quality and the link between FND symptoms. Dr Christopher Graham is a Research Fellow at the University of Leeds, a clinical psychologist and has a clinic for FND at St James Hospital in Leeds. Through the course of Dr Graham’s work, he noticed that many people with FND report poor sleep. His observation made him question if poor sleep is a significant problem for most people with FND.
When asked about the origins of this study Dr Graham stated “Our thinking is that if sleep problems are a key part of FND, then sleep treatments (e.g. sleep hygiene, Sleepio) could help improve outcomes. Similar treatments are now being considered/used with people with other chronic conditions such as liver disease, skin conditions, chronic pain, and mental health conditions.”
FND Hope has also noticed a connection between sleep and functional symptoms over many years. The charity highly supports the online questionnaire and encourages all members across the globe to participate. Bridget Mildon founder of FND Hope stated: “We are hopeful Dr Graham and Dr Simon Kyle, a sleep scientist at the University of Oxford, will get the information they need in this first stage of the FND sleep study.”
To increase the validity of the survey and to study the findings properly Dr Graham and Dr Kyle will need a large sample of people with FND/NEAD to complete the short online survey. Dr Graham states “The more people we can get involved, the more confidence we can have in our findings.”
Small participant numbers have historically stunted the quality and validity of FND research. Patient participation is vital to research. Finding better treatments, and a cure may very well hinge on gathering a large collective database for Functional Neurological Disorder research.
FND Hope has dedicated a great deal of time and attention over the past year addressing this ongoing issue and legitimate concern. Through the assistance of grant funding and the Genetic Alliance, FND Hope will launch the first of its kind FND Scientific Registry. The FND Scientific Registry is part of the Platform for Engaging Everyone Responsibly (PEER) and is on track to go live late Fall 2016. FND Hope encourages all members to consider if participating in research is right for them.
The Sleep Study research survey is no longer taking participants.
Thank you for your interest.
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