VISUAL SNOW SYNDROME

Visual Snow Syndrome Virtual Support Group: What to Expect

The Visual Snow Initiative (VSI) and the AnCan Foundation have partnered together to create the first video chat support group for individuals affected by Visual Snow Syndrome (VSS). This peer-moderated group offers a welcoming safe space where people with VSS and their loved ones can connect face-to-face, share experiences, and support each other in a casual, friendly virtual environment.

The support group is designed to help individuals with VSS feel understood and less isolated by connecting them with others who share similar experiences. The group also aims to foster connections, providing participants with the opportunity to build friendships and share encouragement in navigating the challenges of VSS. Whether you are a VSS patient or a loved one seeking understanding, advice, or simply someone who can relate, this space offers an opportunity to engage in open dialogue about life with VSS, learn from others on similar journeys, and receive or offer emotional support.

Key Features:

• Peer Moderation: The group is moderated by individuals with VSS, offering a relatable and compassionate atmosphere. While they are not healthcare professionals, they are here to help foster meaningful connections, provide encouragement, and offer emotional support to group members
• Casual, Friendly Conversations: The focus is on informal discussions where participants can share personal experiences, provide mutual support, and offer encouragement to one another.
• Face-to-Face Connection: Whether through video chat or call-in, participants can engage in real-time conversations with others who truly understand their experiences. This group is a great place to meet people, make friends, and feel less isolated.
• Open to All: Whether you’re a patient or a loved one, everyone affected by VSS is welcome to join. This is a non-judgmental, supportive space where all are encouraged to participate and build relationships, or listen if they prefer.

The virtual VSS support group meets monthly, providing a consistent opportunity to connect with a global community of individuals on similar journeys. It is designed to be a safe space for learning, relatability, building friendships, and finding solidarity, while also offering encouragement and mutual support in coping with VSS.

Support Group Format

At the start of each session, moderators will ask if anyone would like time to speak. If you wish to share, please let the moderators know, and they will ensure everyone has a chance to participate in an orderly manner. Each participant will be called upon one-by-one, so we kindly ask that you wait for your turn.

If you join after the session has begun, the moderators will ask if you would like to speak and will incorporate you into the speaking order. Please be patient, as we give priority to those who arrived earlier.

We appreciate everyone’s cooperation in maintaining a respectful and supportive environment.

Group Disclaimers & Clarification of Purpose

The Visual Snow Initiative and AnCan’s Virtual Support Group is not a substitute for professional medical advice, diagnosis, or treatment. It is not intended for health-related inquiries or medical guidance, which should be directed to a licensed healthcare provider. Moderated by individuals with Visual Snow Syndrome (VSS), this group is intended as a space for casual discussions, personal sharing, and mutual support. The primary focus is on relatability and shared experiences among peers, rather than offering professional medical solutions.

Members are encouraged to connect, make friends, and share their personal stories. This is a supportive space for engaging in conversations about the daily challenges, coping strategies, and emotional aspects of living with VSS. We believe that offering and receiving support, encouragement, and understanding from others can be vital in coping with this condition. However, please note that these discussions are informal and should not replace individualized medical care.

If you have specific medical questions or need professional guidance, we recommend consulting with a licensed healthcare provider. For additional resources or information about VSS, you may also reach out directly to the Visual Snow Initiative via info@visualsnowinitiative.org.

Group Guidelines

We ask all group members to maintain a respectful and considerate environment. Personal feelings, experiences, and opinions may vary due to the diverse nature of VSS, and differences of opinion are welcome. However, these should always be expressed in a manner that is respectful and constructive, without disparaging or causing harm to others.

The following behaviors are strictly prohibited:

• Bullying, harassment, suggestive, aggressive, or any other inappropriate behavior towards others
• Use of disparaging, harmful, or threatening language of any kind
• Any form of disrespect or intolerance towards another member’s personal experience

Note: If you call in without video, please display your first name in the room, so we know who is speaking and can address you properly.

Moderators reserve the right to remove anyone who violates these guidelines. Thank you for helping us maintain a supportive, respectful space for everyone.