Text Size  
 

ONLINE DISCUSSION GROUPS

The TS Alliance currently offers the following discussion groups:

• Adults with TSC*
• Grandparents of TSC children*
• Teens living with TSC*
• Parents, caregivers and others affected by TSC*
• TSC research, treatment and education professionals

*These TS Alliance online discussion groups are intended for those directly affected by TSC only.  Because of the need for confidentiality, the TS Alliance typically doesn't open these discussions to professionals.

Subscribe for Free

If you are interested in subscribing to one of our online forums free of charge, please read the disclaimer and rules. The Online Community Alliance operates under a set of guidelines and netiquette. Please click here to read these guidelines.

If you agree to the rules, please send an email to dhook@tsalliance.org. Please type "Email list subscription" in the Subject line.

In the body of the message, please mention which of the lists (parents and caregivers, adults with TSC, grandparents of children with TSC, teens with TSC, or TSC professionals) you wish to subscribe to, and please type your name, email address, home address, and phone number for the TS Alliance's database. You will then be contacted to assist you with processing your subscription.

After an attempt has been made by a volunteer to contact you by phone, or, if  you have actually been contacted by phone: 

• Please know the hours of operation for phone calls from our subscription volunteers and/or calls to them to answer new subscribers' questions are Monday through Saturday, 11 am - 6 pm (USA) Central Standard Time (CST).
• After hours, please leave a message and a volunteer will return your call as soon as possible. Thank you! 

Alternate contacts for subscription processing are Maureen Reyes (mommamau1@gmail.com) or Dena Hook (dhook@tsalliance.org).

Technical Difficulties?

Unsubscribe/Change Settings

If you are a subscriber, to view your subscription settings and options, please click on the appropriate link below:

• Parent list: https://my.binhost.com/lists/options/tsalliance-prnt
• Adult list: https://my.binhost.com/lists/options/tsalliance-adult
• Teen list: https://my.binhost.com/lists/options/tsalliance-teen
• Grandparent list: https://my.binhost.com/lists/options/tsalliance-grandparent
• TSC professionals list: https://my.binhost.com/lists/options/tsalliance-pro

Online Community Alliance (OCA)

OCA Mandate
The OCA has the responsibility for operating and maintaining the integrity of a network of online communication resources for the community of those affected by tuberous sclerosis complex (TSC). In coordination with the staff of the TS Alliance and with respect for the dignity of affected persons and a variety of individual needs, the OCA will continuously assess impact and work to improve the quality and quantity of services offered.

To act upon this mandate, the OCA will continuously evaluate the activities on the lists and the ideas and requests of the membership to ensure that each list is meeting the needs of its constituency.

OCA Leadership Team
The Leadership Team of the Tuberous Sclerosis Alliance’s Online Community Alliance is comprised of volunteers who are committed to helping people affected by TSC. They function in active working groups. Together, they are designated as a TS Alliance team. The team is guided by TS Alliance staff members and overseen by the TS Alliance Board of Directors. The current structure of the team is as follows:

TS Alliance/OCA Leadership Team Staff Advisor:
Dena Hook

TS Alliance /OCA Leadership Team Support:
Kari Carlson

TS Alliance/OCA Chair:
Maureen Reyes

Parent and Caregiver List
Maureen Reyes, MommaMau1@gmail.com 
Shelly Richards, mom2ashlin@yahoo.com
Rebecca Slocum, emeraldskybeauty@yahoo.com

Adults with TSC List
Gwen Pryor, gcpryor@gmail.com
Kim Leonard, toomuchclutter2@verizon.net

Teens with TSC List
Dena Hook, dhook@tsalliance.org

Grandparents of Children with TSC List
Maureen Reyes, MommaMau1@gmail.com

TSC Professionals List
Dena Hook, dhook@tsalliance.org
Dr. Vicky Whittemore, vwhittemore@tsalliance.org

Technical Working Group
Maureen Reyes, MommaMau1@gmail.com
Dena Hook, dhook@tsalliance.org
Craig Elias, craig.elias@gmail.com
Jim Weir, weirs3@ameritech.net

Extended Working Groups

Team members also volunteer to participate in other working groups that may be assembled on as-needed basis.

Volunteer Advisors
Cindy Lynch, MaryJane Mudd and Mary Brown

Assistants to the Team

Volunteers from the list membership rosters assist the team in a variety of areas such as online resource research and list welcome-wagon efforts as needs arise.

Questions?
Please contact:

Dena Hook, dhook@tsalliance.org
Maureen Reyes, MommaMau1@gmail.com

Please contact Technical Working Group members for technical assistance with listserv operations.