Skip Navigation Links
 
Text Size
 
 

 

 

 

COUNTDOWN TO

 
2014 WORLD TSC CONFERENCE


"The National TSC Conference we attended in the year after my daughter was diagnosed was a defining moment for us. Not just because of the information I learned at the event, but also because of the lasting connections I made with other families and individuals."

-- Matt Bolger

 

 

Plan Now to Join Us for The Experience OF A LIFETIME

A Message from Conference Chair Janie Frost . . .

Connecting with those who understand and experience the same challenges, sharing in the search for answers and solutions, and working and celebrating together to conquer the obstacles that can make a difference in our lives with TSC are gifts that cannot be explained. Let us bridge all of the information together and take this opportunity to share in this truly life-altering experience. Plan on joining us at the 2014 World TSC Conference! 

Para información en español: www.tsalliance.org/2014conference-es

Conference Overview

The Tuberous Sclerosis Alliance (TS Alliance) is proud to announce the 2014 World Tuberous Sclerosis Complex (TSC) Conference to be held July 3-6, 2014 at the Omni Shoreham Hotel in Washington, DC. We anticipate more than 1,100 attendees from across the globe including families and individuals with TSC; caregivers; healthcare professionals; researchers; a wide array of exhibitors; and others interested in TSC.

Because of the proliferation of information sharing on a global basis, and the TS Alliance’s role as the leading resource for people with TSC, the 2014 event will support an expanded, worldwide TSC community, hence the new name: World TSC Conference.

The TS Alliance's last National TSC Conference was held in 2006 and so much has changed in clinical care and approved treatments since then, including two approved indications to shrink tumors associated with TSC in the brain and kidneys. And in 2012, updating the TSC consensus guidelines for diagnosis, testing and treatment created new gold standards in care.

Benefits of attending the conference in person mean you'll get:

  • the latest and most comprehensive TSC diagnosis, treatment and research information from the world's leading TSC clinicians and scientists
  • assistance through the myriad of educational, transitional, financial and emotional challenges of TSC
  • the opportunity to meet hundreds of other families and individuals with TSC and make life-long connections
  • a better understanding of the role the TS Alliance plays in research, support and government advocacy
  • access to a wide range of service providers
  • multiple networking opportunities and "down time" with others who share the common bond of TSC
  • roundtable open Q&A sessions with the experts
  • activities for the entire family
  • photo sessions for individuals with TSC by Rick Guidotti of Positive Exposure

ONLINE REGISTRATION IS CLOSED. FOR MORE INFORMATION, PLEASE CALL 1-800-225-6872.

Hotel Information

Omni Shoreham Hotel
2500 Calvert Street NW
Washington, DC 20008

Located in one of the District's premier residential neighborhoods, this elegant urban retreat boasts a resort atmosphere and a personal taste of politics, culture, art and music. The four-diamond Omni Shoreham Hotel is situated on 11 lush acres just steps away from the National Zoo. This impressive hotel's vibrant location and genuine service await you.

The TS Alliance has obtained the following special room rates for the 2014 World TSC Conference:

Number People in Room:     Single        Double        Triple        Quad   
Nightly Rates: $169 $179 $189 $209

Please note: All rooms are non-smoking. Hotel parking is $28 per night.

To make hotel reservations, please contact the Omni Shoreham toll-free by calling 1-888-444-OMNI (1-888-444-6664) or you can make an online reservation.  Be sure to mention "TS Alliance" to get the special rates.

Conference Agenda

The 2014 World TSC Conference will feature four specialized educational tracks and one research-focused track:

  • Track A: Pediatrics -- These sessions specifically address questions of parents with children, including seizure types and treatments, epilepsy surgery and imaging; accessing early childhood services; navigating the education system; genetics; and behavioral challenges with hands-on practical approaches.
  • Track B: Transition -- This track focuses on issues important to parents of children transitioning into adulthood with sessions on TSC through the development spectrum, advocacy in the education system for transition planning, long-term care, guardianship, residential options, vocational training or college preparation and work options, aggressive behavioral management and kidney issues in young adults.
  • Track C: Adults -- This conference devotes an entire track to concerns faced by adults living with the disorder as they make care decisions for themselves and their families. These sessions touch on management of TSC as an adult, current clinical studies and updates on new treatment options, reproductive issues, lung involvement, seizure management in adults with TSC and mental health issues.
  • Track D: Special Issues -- This track includes specialty issues such as navigating the conference as a newly diagnosed individual or family, sleep disorders in TSC, the Affordable Care Act and its implications on those living with TSC, other manifestations of TSC, autism spectrum and therapeutic options, financial protection, accessing government services and coping techniques.
  • Track E: Research Track -- This track gathers the world’s leading basic and clinical science researchers and health professionals in one location to discuss advancements in TSC clinical research, clinical trials and new treatments options.

The conference will also offer additional programs, services and activities such as:

  • TSC 101 for newly diagnosed individuals or families
  • Themed dinners
  • Day camps for children and dependent adults
  • Multiple formal and informal networking opportunities
  • Sessions in Spanish
  • Specialized group sessions
  • A teen lounge
  • Exhibit hall with service providers, resources and a variety of vendors

Day Camp

We are thrilled to offer a Day Camp for all ages staffed once again by Corporate Kids Events and chaired by Cindy Fowler, TSC mom and former TS Alliance board member. Camp choices include:

Camp Explorer -- for children with special needs
Camp Discovery -- for siblings and children without specialized needs
Adult Day Camp -- for dependent adults

Day Camp fees are $30 per day per camper, which includes lunch as well as morning and afternoon snacks.

One-on-one aides will also be available for $150 per person per day, in addition to Day Camp fees.  Day Camp and one-one-one aide registration isincluded in the online conference registration process.

For detailed information about our Day Camps, please click here.

Conference Registration

Online registration is closed; please call 1-800-225-6872 for registration information.  Please note: All-inclusive conference registration fees are per adult and cover educational sessions; breakfast, lunch and dinner; break snacks; and exhibit hall access.  Children under 11 years of age eat dinner for free; children 12 and up will be charged $25 each per dinner. If you have any questions, please call the TS Alliance toll-free at 1-800-225-6872.

  Full Conference Two Days One Day
Registration After April 30, 2014 $350 $275 $145

Download the Conference Mobile App

Our conference app will let you use your mobile device (phone or tablet) to view conference schedules, maps, sponsors, speaker bios and pictures, plus much more. To get the app, tap the following link from your device, or type it into your device's browser to download the app for iPhone, iPad, or Android:  https://crowd.cc/worldtscconf

National Walk on the Mall - Sunday, July 6, 2014

After the conference ends noon, Sunday, July 6, 2014, please join us for the Third Annual Step Forward to Cure TSC® National Walk on the Mall, starting at 1 pm. 

For more information about the National Walk on the Mall or to register online, please click here.

 

Conference Sponsorships

By bringing together individuals and families affected by TSC with healthcare and other service providers, the 2014 World TSC Conference is truly the largest forum of its kind, anywhere around the globe. The conference provides maximum exposure to showcase products and/or services, increase visibility among care providers and partner with the only national U.S.-based nonprofit organization serving those affected by TSC -- the TS Alliance.

If you are interested in becoming a sponsor, please download the 2014 World TSC Conference Overview along with Sponsorship Opportunities to learn more about all options for sponsors and exhibitors.

For more information on conference sponsorships, please contact Lisa Moss, Director of Donor Relations, at (240) 638-4648 or lmoss@tsalliance.org.


 
  Skip Navigation Links
Find a Local Branch
Find a Global Alliance
Become a Volunteer
Become a Member
Government Outreach
Connect With Others
Ways to Give
Your Impact
 
Make a Donation to the Tuberous Sclerosis Alliance
  calendar
 
 
   



Unlock the Cure: The Tipping Point in the Battle Against TSC
Tuberous Sclerosis Alliance Overview
La Esclerosis Tuberosa (Spanish Intro to TSC)
Infantile Spasms & TSC: A Devastating Diagnosis
Questions & Answers About the TS Alliance


ABOUT TSC
What is TSC?
How is TSC Diagnosed?
Signs of TSC
Genetics of TSC

INDIVIDUALS & FAMILIES
Living with TSC
Family Support
Adult Resources

TSC Connect
Brochures & Booklets
Information Sheets
Life Stages Guides & Personal Journals

Perspective Magazine Archives
TSC Clinics

RESEARCHERS
TS Alliance Grants Program
Other TSC Funding Opportunities
TSC Alert Newsletter Archives
Clinical Trials
TSC Natural History Database
Research Resources
International Scientific Advisory Board

Tuberous Sclerosis Alliance Online CommunityTuberous Sclerosis Alliance Support Community