TS Alliance of the Pacific Northwest

EST. 2004
Serves the states of Washington and Oregon.

Click here for a description of our Community Alliance program.

The TS Alliance of the Pacific Northwest is a group of TSC individuals, families, healthcare providers, board members, and volunteers. This group is led by volunteer leadership dedicated to furthering the mission of the TS Alliance in their local state(s) or region by dedicating themselves to finding a cure for TSC and improving the lives of those affected.

Volunteer Leadership

Chair

gloria-triebenbachName: Gloria Triebenbach
City, State: Poulsboro, WA
Phone: (360) 509-9085
Email: batnblueyes2@aol.com
Other volunteer positions held in addition to Chair: Step Forward to Cure TSC Walk Chair
Short Bio and connection to TSC: I am a mother of an adult daughter with TSC, honorary mother of a 2nd adult daughter with TSC, and mom of 2 adults without TSC. I am an advocate, a wife, a grandma, and a nurse. Our family knows good days and we know terrible horrible days that start with the worst that TSC can hand out. It takes a huge dedicated team of people to work on issues as big as TSC and my goal is to not stop until TSC is defeated. My family and I ‘Give everything but Up!’

Vice Chair

Name: Debbie Rothweiler
City, State: Bothell, WA
Phone: 425-344-9864
Email: d.rothweiler@frontier.com
Connection to TSC: Parent

Step Forward to Cure TSC Walk Chair

Gloria Triebenbach – See information above.

Regional Leadership Positions

Adult Regional Coordinator

Adult Regional Coordinators act as the connection for adults diagnosed with TSC to connect with other adults within their region. They will be knowledgeable about resources, events, support meetings, conferences and any new research on TSC that pertains to adults with TSC. They provide support to the Community Alliances in their region in developing a welcoming and inviting atmosphere for adults with TSC in order to promote adult involvement and support within the Community Alliance.

Adult Regional Coordinator, Region 1

States served: WA, OR, ID, WY, MT, AK, HI

Rob and Shannon GrandiaName: Rob and Shannon Grandia
City, State: Riverside, CA
Phone: Rob Cell: 714-514-3111, Shannon Cell: 714-335-2375, Home: 951-697-8851
Email: grandia@verizon.net
Other volunteer positions held in addition to Adult Regional Coordinator: None
Connection to TSC: Rob – Adult with TSC, Parent of children with TSC, Shannon – Spouse of Adult with TSC, Parent of children with TSC

Dependent Adult Transition Resource Coordinator

Dependent Adult Transition Resource Coordinators are knowledgeable in state resources, events, support meetings, conferences, and any new research on TSC that pertains to dependent adults and transitioning young adults with TSC and their caregiver.  The Dependent Adult Transition Resource Coordinator will work collaboratively with their Community Alliance(s) in supporting and connecting dependent adults, transitioning young adults, and their caregivers to state resources.

Dependent Adult Transition Resource Coordinator, Oregon

Name: Susan McBrine
City, State: Florence, OR
Phone: (435) 230-0185
Email: susanmcbrine@gmail.com
Other volunteer positions held in addition to Dependent Adult Transition Resource Coordinator: None
Connection to TSC: Parent of an Adult

Find a Local TSC Clinic

To find the TSC Clinic nearest to you, visit the TSC Clinic page.

Upcoming Events

Visit www.StepForwardtoCureTSC.org to find a walk nearest to you.

Don’t miss out on any updates!

Click here  to join the mailing list for the TS Alliance of the Pacific Northwest and be notified of all upcoming events.

You can also visit us on Facebook to receive the latest Community Alliance updates!

If you would like connect with other TSC individuals or family members in your state via phone or email, visit our TSC Connect page to find a list of individuals in your state that you can contact any time.