ASPIRE Facebook Group & ChitChat Meetings

Description and Rules

ASPIRE Facebook Group Description

ASPIRE’s mission is to improve the lives of children and adults affected by PANS, PANDAS, and related encephalopathies. The ASPIRE Facebook group provides additional one-on-one, hive mind support for adult patients with PANS PANDAS and parents/caregivers of PANS/PANDAS patients. Admins and moderators will not have the answers to all your questions, but we will try to help you find them. Whether you need a hug, a place to vent, a place to be excited, need information, etc., we hope you will find it here. PANS PANDAS is a rough road, and it can be incredibly isolating, but we believe that you are never alone on this journey once you have found a home. We ASPIRE to move mountains together. 

ASPIRE ChitChat Description

ASPIRE ChitChats are online/in-person supportive meetings run by and for parents of kids with PANS and adults with PANS meeting to talk about PANS PANDAS. So grab a seat, talk about your situation, get a hug, listen, and support others in the group. Join us and remember that you are never alone; we have a fantastic community and want you to be a part of it! ChitChats are not professional-led support meetings providing professional therapy. We can’t give direct medical advice, and we are not working in a professional capacity even if a chat leader is a professional in the PANS PANDAS world. If we have a guest speaker, then that is a different situation, but even then, they typically don’t give direct advice to people who are not current clients.

ASPIRE Facebook Group

ASPIRE Facebook Page

ASPIRE Facebook Cover PANS PANDAS


ASPIRE Facebook Group Rules

Note: Alliance to Solve PANS & Immune-Related Encephalopathies (ASPIRE) provides ChitChat Group Meetings for adults and parents of children with PANS PANDAS to provide a space to share personal experiences for informational use only. The information transmitted is not independently verified by ASPIRE; it is neither direct medical advice, a statement of policy, nor legal interpretation. Please consult your or your child’s doctor for medical advice. References to any specific product or entity are not a recommendation or endorsement by ASPIRE. Views expressed by ASPIRE volunteers, ASPIRE employees, guests or participants are their own and do not imply an endorsement by ASPIRE and do not necessarily reflect the opinions of ASPIRE.

1 Be Kind and Courteous – No Hate Speech or Bullying This is a welcoming environment. Please treat everyone with respect. Healthy debates are natural, but kindness is required. Make sure everyone feels safe. Bullying of any kind isn’t allowed, and degrading comments about race, religion, culture, sexual orientation, gender, or identity will not be tolerated.

2 Respect Everyone’s Privacy Being part of this group requires mutual trust. What’s shared in the group should stay in the group. Authentic, expressive discussions make groups informative but may also be sensitive and private. Remember that everyone’s experience is unique, and what works for one person won’t always work for another. We are all in this fight together, so let’s be supportive of each other.

3 No Promotions or Spam Give more than you take to this group. Self-promotion, spam, and irrelevant links aren’t allowed. If you are selling/promoting a product, do not send unsolicited DMs regarding the product to group members.

4 No Personal Go Fund Me Pages or Similar We would love to allow it, but this does not work in a group setting from experience.

5 Must be a PANS PANDAS Patient or Caregiver/Parent You must either be an adult with PANS/PANDAS or a parent/caregiver to at least one child with PP. If needed, we reserve the right to request a referral from another PANDAS/PANS caregiver, parent, patient to gain entry.

6 Medical Provider Protection While we want to be a resource to discuss providers, please be conscientious about making supercritical comments about providers; critical comments should be reserved for DMs. Use initials and location rather than full names. 

7 We Cannot Provide Crisis Intervention or Direct Medical or Legal Advice ASPIRE volunteers and employees are unable to provide crisis intervention services or provide direct medical or legal advice. Please call your doctor or 911 immediately if you are or your child is feeling suicidal or unsafe.

8 Don’t Block the Mods/Admins Simple.


ChitChat Group Meeting Rules

Note: Alliance to Solve PANS & Immune-Related Encephalopathies (ASPIRE) provides ChitChat Group Meetings for adults and parents of children with PANS PANDAS to provide a space to share personal experiences for informational use only. The information transmitted is not independently verified by ASPIRE; it is neither direct medical advice, a statement of policy, nor legal interpretation. Please consult your or your child’s doctor for medical advice. References to any specific product or entity are not a recommendation or endorsement by ASPIRE. Views expressed by ASPIRE volunteers, ASPIRE employees, guests or participants are their own and do not imply an endorsement by ASPIRE and do not necessarily reflect the opinions of ASPIRE.

1 Be Kind and Courteous – No Hate Speech or Bullying This is a welcoming environment. Please treat everyone with respect. Healthy debates are natural, but kindness is required. Make sure everyone feels safe. Bullying of any kind isn’t allowed, and degrading comments about race, religion, culture, sexual orientation, gender, or identity will not be tolerated.

2 Respect Everyone’s Privacy Being part of this group requires mutual trust. What’s shared in the group should stay in the group. Authentic, expressive discussions make groups informative but may also be sensitive and private. Remember that everyone’s experience is unique, and what works for one person won’t always work for another. We are all in this fight together, so let’s be supportive of each other. ASPIRE cannot guarantee participants’ privacy, so we ask participants to be mindful of what they share.

3 No recording (Audio and Video), screenshots, and photography Guests and participants are not allowed to record in any way without express permission by ASPIRE. If an individual violates this rule, ASPIRE will restrict them from participating in any ASPIRE forums going forward. These restrictions aim to create a safe environment for participants to share their personal information. In the event that ASPIRE would like to record a ChitChat Group Meeting, ASPIRE will require the signatures from each participant being filmed or recorded.

4 No Promotions or Spam Give more than you take to this group. Self-promotion, spam, and irrelevant links aren’t allowed. If you are selling/promoting a product, do not send unsolicited DMs regarding the product to group members.

5 No Personal Go Fund Me Pages or Similar We would love to allow it, but this does not work in a group setting from experience.

6 Must be a PANS PANDAS Patient or Caregiver/Parent You must either be an adult with PANS/PANDAS or a parent/caregiver to at least one child with PP. If needed, we reserve the right to request a referral from another PANDAS/PANS caregiver, parent, patient to gain entry.

7 We Cannot Provide Crisis Intervention or Direct Medical or Legal Advice ASPIRE volunteers and employees are unable to provide crisis intervention services or provide direct medical or legal advice. Please call your doctor or 911 immediately if you are or your child is feeling suicidal or unsafe.

Disclaimer

The Alliance to Solve PANS and Related Encephalopathies (ASPIRE) (“Site Owner” or “ASPIRE”) presents the information on its website as a service to Internet users. Any information provided at ASPIRE presentations, meetings, in print, on our website, or on our blog, or social media outlets such as Facebook, Twitter, Instagram and Pinterest, or elsewhere is provided for informational purposes only and should not be construed as medical or legal advice. ASPIRE does not endorse specific programs, schools, treatments, diets, therapies, supplements / medications / brands or the practices / protocols / theories of any individual / group or any other professional service/service provider, including, but not limited to, legal, accounting, financial/financial planning / investing, or insurance recovery. Caregivers and patients must make their own decisions concerning any treatment, therapy or provider. ASPIRE recommends that caregivers and patients consult with an experienced doctor or other medical professionals before commencing medical treatments for their children or themselves, and consult with any other professional service provider before retaining their services. While the information on this site is about legal, medical, biomedical, educational, therapeutic, financial, and other issues, it is not professional advice. The information comes from a variety of sources and is not independently verified by ASPIRE. Moreover, due to the rapidly changing nature of information relating to PANS/PANDAS and Related Encephalopathies, ASPIRE makes no warranty or guarantee concerning the accuracy or reliability of any of the content at this site or at other sites to which we link. Transmission and use of the information herein is not intended to create and its receipt does not constitute an attorney-client relationship or any other professional-patient / client between ASPIRE and the user. No user should act or refrain from acting on the basis of any information contained herein without seeking appropriate advice regarding their individual facts and circumstances in the relevant field (legal, medical, financial, etc.).

ASPIRE Facebook Group

ASPIRE Facebook Page