As many of you may already know, Not Defined By FND is conducting a series of comprehensive surveys in order to gain valuable insights into various aspects of FND. One of the primary objectives of these surveys is to pinpoint the specific needs of the FND community. In the month of April, we analyzed the results of the surveys that had been completed so far, and we have identified the most frequently mentioned areas of need (click here to see the summary). We then compared these findings to our mission and goals to assess the level of alignment.
It is imperative for us to ensure that our efforts are closely aligned with the needs of the FND community. We are dedicated to addressing these needs and striving to make a positive impact. In the following examples, we will demonstrate how our mission and goals are in sync with the identified needs of the FND community, and how we are actively working towards fulfilling them.
The FND Communities' Needs & What We're Doing to Meet Them
Need: Raising awareness within both the general community and the medical field
Current Initiatives:
Hosting awareness events both in-person and online.
Producing educational and informative videos.
Providing information on our website.
Future Goals:
Developing and distributing a comprehensive FND booklet to further educate and inform individuals about the condition.
Need: Implementing a change of name to accurately represent the condition
Current initiatives:
Advocating for the removal of outdated names through a petition
Future goals:
Petitioning for the removal or disassociation of conversion disorder from FND in the DSM
Conducting a survey within the medical community to determine an appropriate name and rationale for the change.
Needs: Establishing a coordinated care team to provide comprehensive support, providing FND-specific training for medical professionals, & ensuring that medical professionals are knowledgeable about FND
Future goals:
Advocating for the inclusion of fundamental FND material in the curriculum of all specialties. Our mission is to ensure that essential FND content is integrated into educational programs across various fields. By promoting inclusivity and diversity in learning materials, we aim to enhance the knowledge and understanding of FND among students and professionals alike. Together, we can pave the way for a more comprehensive and equitable educational experience for all.
Need: Offering lifestyle support for individuals living with FND
Current initiatives:
Offering FND medical alert/ID products
Support groups (online)
Future goals:
Support groups (in-person)
Conducting cooking classes to educate on safe cooking methods, brain-healthy foods, and other FND related topics
Providing mobility aids
Creating and distributing care packages
Groceries
Personal hygiene
Activity boxes
Need: Providing support for caregivers
Current initiatives
Support groups (online)
Future goals:
Support groups (in-person)
Outing day
Need: Investing in research to further understand and treat FND
Current initiatives
Conducting continuous surveys to gather data on different facets of FND
Future goals
Collaborating with universities and organizations to initiate research projects
As we grow, and as we progress and achieve our current goals, we will incorporate new objectives that are in line with our mission. We will consistently assess our goals against survey data to guarantee they align with the needs of the FND community we serve.
Do you have any ideas or suggestions for specific actions we can take to meet the needs of the FND community? Please share your thoughts with us!
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