Champion Our Cause: Join the TSC Alliance Volunteer Movement
“The smallest act of kindness is worth more than than the grandest intention.” – Oscar Wilde
The TSC Alliance thrives on the service of selfless individuals across the country who give of their time, talent, and resources to help us achieve our mission to find a cure for TSC and improve the lives of those affected. Without them, we would not be where we are today. They have propelled our organization to levels once thought impossible — from the original four volunteer mothers who started the organization in 1974 to nearly 3,000 individuals championing our cause each year today!
The TSC Alliance is seeking volunteers to serve as champions for our cause. We need your help to facilitate local connections for those affected by TSC, raise revenue and increase awareness while supporting the mission of our organization. There are numerous ways to participate as a volunteer at the TSC Alliance with a position to fit anyone who is interested in being a part of our team. You can check out all of our volunteer positions here.
See below for current openings.
Community Alliance Chair
The responsibilities of the Community Alliance Chair are as follows:
- Provide one-on-one support to those who contact the TSC Alliance seeking a connection in the local area
- Organize social activities like picnics, holiday parties, support groups and educational sessions with featured speakers
- Serve as the point of contact for individuals and families seeking more information on local services, professional services and TSC Alliance programs
- Attend the annual March on Capitol Hill and leadership training event in Washington, DC and/or participate in government relations effort
- TSC Alliance of Arkansas
- TSC Alliance of the Heartland
- TSC Alliance of New England
- TSC Alliance of Tennessee
Approximately 30-40 hours annually in the support functions plus the annual March on Capitol Hill in Washington, DC from Tuesday to Thursday in the first week of March with approximately 5-10 hours leading up to the event and 5-10 hours following for the March on Capitol Hill and Leadership Training.
Skill Set Required:
Willingness and ability to communicate with local families, communication skills, planning, organization, interest in government advocacy
Step Forward to Cure TSC Walk Chair
The Chair serves as the volunteer leader for the planning and execution of the Step Forward to Cure TSC walk on the local level. The Chair is responsible for recruiting an effective volunteer committee focused on raising revenue, increasing awareness, and implementing event activities. He/she will provide leadership through delegation and support to his/her committee.
- TSC Alliance of Greater Chicago
Education Parent Mentors
Does your child or has your child been on an IEP in the school system? Then you have the experience to become an Education Parent Mentor (EPM).
The TSC Alliance is looking for Education Parent Mentors (EPM) for: AZ, AR, CO, CT, ID, IN, ME, MD, MS, MN, MT, NH, NJ, NM, OK, OR, RI, SC, SD, WA, WY
An Education Parent Mentor is trained in educational rights in the Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act of 1973 Section 504. They are to support and educate parents/caregivers in becoming better educational advocates for their child. They can attend a school meeting (In Person, SKYPE, Go to Meetings, Facetime, or Conference Call) to give support to both the parent and school district. They can provide TSC 101 Training for the school system and provide TSC Alliance support resources.
The TSC Alliance is looking for Educator Mentors in all 50 states in all of the below positions.
The Educator Mentor Program (EMP) was developed to support school systems in understanding the learning needs of children with TSC. The EMP is made up of administrators, therapists, behavior specialist, physiologists, and teachers from pre-kindergarten to college level having experience with TSC. They provide one-on-one support (SKYPE, e-mail, facetime, text, conference calls) to any professional in the school system needing education and support in understanding the educational complexities of TSC.
Dependent Adult Transition Resource Coordinator
Do you have a Dependent Adult Child?
The TSC Alliance is looking for a Dependent Adult Transition Resource Coordinator (DATRC) for: AL, DE, ID, IN, IA, ME, MD, MS, MT, NE, NH, NJ, NM, NY, OK, RI, SC, SD, UT, VT, WY
A Dependent Adult Transition Resource Coordinator is 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. They provide one on one support to parents/caregivers to maneuver their state’s resource systems.
TSC Connect Program
The TSC Alliance is looking for TSC Connect Network Members in all 50 states.
The TSC Alliance TSC Connect Network is an organized partnership of individuals whose lives have been affected by tuberous sclerosis complex. The volunteers are committed to offering support and sharing their experiences with others who are faced with the challenges of TSC. Across the nation, the TSC Connect Network provides the latest medical information, education and support to those individuals who are seeking understanding about the genetic disorder and offering them words of encouragement and empowerment. Volunteers come to the network with a wealth of knowledge, awareness, and experiences.
Individuals in the TSC Connect Network provide their contact information town and state (not their address), e-mail, and phone (optional) and agree to talk with anyone who needs one on one support. When a new constituent call into the TSC Alliance they are given a list of their TSC Connect Network in their state.
4 – 10 hours annually. There are quarterly phone calls to equip volunteers with relevant information (one hour each call), and you may receive a phone call or phone calls throughout the year from people in your area who desire to connect with another individual or family affected by TSC.
Skill Set Required:
The willingness and ability to communicate with other individuals and families affected by TSC via phone, email or locally face-to-face if desired.
Volunteers are also needed to serve is various roles across the country. Apply for any of our leadership positions here.