Individuals & Families

Adults

Introducing the TS Alliance Adult Initiative

About the TS Alliance Adult Initiative

Read the TS Alliance’s Adult Initiative Plan.

Adult Regional Coordinators

If you want to connect to another adult with TSC, please contact an Adult Regional Coordinator in your area.

Free Adult Informational Calls

Are you an independent or semi-independent adult with TSC? If so, please join us for our free informational calls.

If you have questions or would like to receive handouts (if available) before each call, contact Dena Hook at dhook@tsalliance.org or (800) 225-6872.

To participate in any of the following free informational calls, use the toll-free call-in number: 1-866-613-5223 then enter access code: 4334003#. Each call’s length is one hour. Please note the time zones and start times.  These are regional calls but anyone across the country can call in.

  • Please check back for the Spring 2017 call schedule.

Past Topic Call Notes

Additional Resources

Where can I get more information?

American Lung Association
Phone:  1-800-LUNGUSA (1-800-586-4872)
To speak to a lung health professional, contact the American Lung Association Lung HelpLine at 1-800-548-8252
Website: www.lungusa.org

American Thoracic Society
61 Broadway, 4th Floor, New York, NY  10006
Phone:  212-315-8600
Website: www.thoracic.org

The LAM Foundation
4520 Cooper Road, Suite 300, Cincinnati, OH  45242
Phone:  513-777-6889
Website: www.thelamfoundation.org

Helpful Links

  • The Arc — The TS Alliance has a formal partnership with The Arc, which promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. They provide advocacy, training, and support services for people with intellectual and developmental disabilities through local Arcs.
  • Wego Health Sharing Hub — TSC: Education and Engagement
  • Bender Consulting Services (Consulting firm that specializes in recruiting and hiring people with disabilities for full-time, competitive employment opportunities)
  • Social Security Benefits Guide

Educational Videos

Personal Biographies

Publications

Life Stages Guides

The Life Stages Guides were developed by the TS Alliance resource information to individuals with TSC and their families and/or caregivers for many of the non-medical frequently experienced from infancy to adulthood.

Adult Journal

Because the treatment of tuberous sclerosis may involve a variety of health care professionals, it is very useful to have a working system to track ongoing medical care and treatment. This journal was specifically designed to provide you with an organized way of keeping accurate records of medications, procedures, appointments, therapies, surgeries, tests and manifestations.

Additional Support Materials

Finding a Doctor

If you have just been diagnosed with tuberous sclerosis complex (TSC), are moving to a new location, or are a young adult with TSC who is no longer eligible for pediatric care, finding a doctor who is knowledgeable about TSC may be very difficult so the TS Alliance developed an online guide to help you.

Insurance 

It’s important to ensure your healthcare insurance meets your needs.  Please refer to this special information sheet, Be Aware of Changes to Your Healthcare Insurance, for more inforrmation.

Communicating with Healthcare Professionals

Family Support

Tuberous sclerosis complex (TSC) affects every member of the family, not just the person with the disorder. This section is dedicated to the siblings, parents and other family members of people with TSC and their need for understanding, information and support.  Following are some resources to help:

PowerPoint Presentation