TS Alliance of the Intermountain West

EST. 2004
Serves the states of Utah, Idaho and Montana.

Click here for a description of our Community Alliance program.

The TS Alliance of the Intermountain West 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

Name: Loni Thurston
City, State: Provo, UT
Phone: (801) 361-2355
Email: lonithurston@gmail.com
Connection to TSC: I am a mother of a 16 year old girl and step-mother to 2 boys and 2 girls. I am grandmother of 8. For many years I was an Operations Manager for The American Funds Group but married my husband in 1998 and decided to become a full-time wife and step-mother. It was at this time that I was introduced to TSC. Both of my step-sons have TSC, but they are affected very differently. Greg (35 years old) is a dependent adult with TSC, affected by autism and mentally and emotionally handicapped. Michael (33 years old) also has TSC and is doing extremely well. He is married, has three kids and a successful career.

The TS Alliance has been a part of our lives since Greg was diagnosed at the age of 2. My husband was on the Board of Directors for many years, including acting as Chair. I am excited to begin this journey with the goal of assisting in the support of families and individuals affected by TSC.

Vice Chair

This position is currently open. If you are interested in the Vice Chair position, please click here for a position description and/or to apply.

Step Forward to Cure TSC Walk Chair

This position is currently open. If you are interested in the Walk Chair position, please click here for a position description and/or to apply.

Regional Leadership

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 and 2

States served: WA, OR, ID, WY, MT, AK, HI; NV, UT, CO, CA, AZ, NM;

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.

This position is currently open. If you are interested in the Dependent Adult Transition Resource Coordinator position, please click here for a position description and/or to apply.

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 Any Updates!

Click here to join the mailing list for the TS Alliance of the Intermountain West 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.