TSC Alliance of Alaska

EST. 2016

Click here for a description of our Community Alliance program.

The TSC Alliance of Alaska 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 TSC 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


Rebecca RacenetName:  Rebecca Racenet
City, State:  Wasilla, Alaska
Home Phone:  (907) 357-5160
Cell/Text:  (907) 232-9490
Email:  rebecca.racenet@gmail.com
Short Bio and Connection to TSC: I live in Wasilla, Alaska with my husband Paul.  We have 3 daughters.  My youngest daughter was diagnosed with TSC when she was 1 year old, she is now 10.  I am a work-at-home mom with a part-time crafting business.   I also enjoy volunteering in our schools & community, traveling, reading, and spending time with friends & family.

Vice Chair

erica-chillaName: Erica Chilla
City, State: Soldotna, AK
Phone: (907) 398-2130
Email: ericachilla@gmail.com
Connection to TSC: Mother of 3 world class mischief makers, my 2nd son has TSC


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

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, Alaska

Name: Tom Buzek
City, State: Wasilla, AK
Phone: (214) 399-9758
Email: tom1tmg@gmail.com
Connection to TSC: Parent

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 TSC Alliance of Alaska 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.