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When my son Griffin was 10 years old, a routine MRI showed an explosion of growing tumors called subependymal giant cell astrocytomas (SEGAs) in the ventricles of his brain. In lieu of facing life-threatening surgery, Griffin was able to participate in a clinical trial of an investigational medication to shrink the SEGAs, and as a result a significant reduction occurred in the size of his tumors. Moreover, he has seen a dramatic decline in frequency and severity of seizures. For Griffin, the medication radically improved his physical, mental and emotional health with negligible side effects. Not only did the trial improve my son’s quality of life, but it also gave families a new treatment for SEGAs and kidney manifestations.

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The clinical trial Griffin participated in was a decade ago, and the US Food and Drug Administration (FDA) subsequently approved the first drug designated to specifically treat SEGAs associated with tuberous sclerosis complex (TSC) in 2010. When I reflect on the progress made in the last eight years and the current global state of TSC research, I am truly in awe of how far we have come. Since 2010, the TS Alliance has invested in building a next-generation research program aimed at advancing potential treatments along multiple points of the drug discovery pathway more rapidly and efficiently.

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The TS Alliance has also formed vital partnerships with government, industry and other advocacy organizations to ensure research is being conducted collaboratively and everyone follows the same long-term plan to achieve shared benchmarks. As a result, the scalable infrastructure and team are in place to spur incredible breakthroughs in the next few years, but this is not a foregone conclusion.

The incredible progress made in research has not come, and will not continue, by default. It is the result of individuals with TSC opting to participate in the Natural History Database and donating samples to the TSC Biosample Repository, providing critical data to help researchers understand the variability of TSC. It is the result of volunteers serving on Peer Review Panels for the Department of Defense’s Tuberous Sclerosis Complex Research Program, reviewing research grants and providing testimony to the FDA to ensure thevoice and priorities of those affected by this disease are considered when evaluating new treatments. It is the result of parents enrolling their children, and individuals with TSC enrolling themselves, in clinical trials withthe hope of finding better treatment options for everyone affected. And it is the result of those who continue to advocate for funding at the Federal and State levels, who raise awareness and funds in their communities and who donate their time and money to ensure progress in research can continue unimpeded.

In short, it is because of you.

The TS Alliance has set ambitious goals to rapidly advance research over the next five years because it is backed by a dedicated community committed to achieving them. The PREVeNT trial, the first-ever preventative clinical trial in the United States for infants with epilepsy and TSC, currently being conducted by members of the Clinical Research Consortium, demonstrates that preventative intervention is possible,which begs the question: What other aspects of TSC might we be able to prevent entirely? The depth of data in the Natural History Database and Biosample Repository ishelping researchers unlock the mysteries of TSC which, when paired with new therapies advanced by the Preclinical Consortium, could provide a blueprint for personalized medicine where those affected receive treatment tailored to their specific manifestations, genetics or biomarkers. These possibilities would have been unimaginable evena few years ago, but today we can work toward making them a reality.

A cure won’t be handed to us or be given by any other means than by us continuing to advocate for ourselves and our families and by supporting the researchers andclinicians who have dedicated themselves to improving the lives of anyone touched by TSC. We cannot wait for others to keep the momentum going for us; we mustdo so together. We can change lives. And we can get to a place where no one has to suffer from the devastating effects of tuberous sclerosis complex, but it takes action.

Today I’m asking you to take action.

Your donation today, large or small, will continue to accelerate TSC research and bring us one step closer to preventing the worst manifestations of the disease, developingpersonalized therapies and ultimately finding a cure. We can rewrite the future for all those affected, but only with your support.

With gratitude,

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Debora Moritz
Chair, TS Alliance of Arizona; Member, TS Alliance Government Relations Committee; Member, Biosample Repository Steering Committee

 

The 2018 World TSC Conference was, in part, a celebration of how far TSC research has come and a look forward to where we are going next. All conference educational sessions are now available for online viewing here. Here are some exciting research updates from clinicians at the conference:

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“From the very earliest stages of the Clinical Research Consortium, as well as clinical research in other aspects of TSC that we’ve been doing at our center in collaboration with other centers around the country, the TS Alliance has been one of our direct partners. One of the primary ways they’ve helped us is being the link between the TSC families and patients so we are addressing the needs they have and clinical questions be answered that can ultimately deliver improvements in clinical care.”

- DARCY KRUEGER, MD, PHD, TSC CLINIC DIRECTOR AT CINCINNATI CHILDREN’S HOSPITAL

Learn more: Global Status of TSC and Consensus Guidelines forDiagnosis, Surveillance, and Treatment 

 

“We’ve just received funding from the Department of Defense TSCRP Program for Dr. Laura Farach’s project to search for genetic modifiers.This is looking at the other genes to see if another gene or genes influences whether you have seizures or how severe your seizures are with tuberous sclerosis complex. And I think this is really the new frontier in the genetics of TSC–to try and find modifier genes that will give us information about how severe it’s going to be in a particular individual.”

- HOPE NORTHRUP, MD, TSC CLINIC DIRECTOR AT THE UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON

Learn more: Genetics, Biosamples, Natural History Data andPotential for Personalized Medicine

 

“It’s been very exciting over the past four or five years with purified cannabidiol or CBD in clinical trials for refractory epilepsy. Refractory epilepsy affects about two-thirds of people with TSC so we’ve had great need for safe, effective and well tolerated medications. Preliminary evidence shows it can be quite effective in patients with tuberous sclerosis complex. There are ongoing randomized controlled trials of CBD specifically in individuals with TSC with refractory epilepsy. We should have those results hopefully within the next year.”

- ELIZABETH THIELE, MD, PHD, TSC CLINIC DIRECTOR AT THE CAROL AND JAMES HERSCOT CENTER FOR CHILDREN AND ADULTS WITH TUBEROUS SCLEROSIS COMPLEX AT MASSACHUSETTS GENERAL HOSPITAL

Learn more: Preventative Trials and Cannabidiol (CBD) Treatment for TSC

 

“One of the ways we’re trying to utilize the work that’s been going on in tuberous sclerosis complex is to understand how autism comes about. Is there some kind of biomarker that can tell us an individual born with TSC will go on to develop autism? What are the connections in the brain that result in autism spectrum disorder symptoms? We have made some important headway in that line of work.”

- MUSTAFA SAHIN, MD, PHD, TSC CLINIC DIRECTOR AT BOSTON CHILDREN’S HOSPITAL

Learn more: Autism Spectrum Disorder, Biomarkers,Therapeutic Options and Clinical Trials (for all ages)

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Your gift is very much appreciated and may be tax deductible pursuant to IRC §170(c) . A copy of our latest financial report may be obtained by writing to Tuberous Sclerosis Alliance, 801 Roeder Road, Suite 750, Silver Spring, MD 20910, calling 800-225-6872 or visiting www.tsalliance.org/about-us/our-results. The Tuberous Sclerosis Alliance has been formed to find a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. If you are a resident of one of these states, you may obtain financial information directly from the state agency: FLORIDA A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE, 1-800-435-7352 (800-HELP-FLA) WITHIN THE STATE OR VISITING www.800helpfla.com. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE. Florida Registration #CH3286; GEORGIA - A full and fair description of the programs of the Tuberous Sclerosis Alliance and our financial statement summary is available upon request at the office and phone number indicated above; MARYLAND For the cost of copies and postage, Office of the Secretary of State, State House, Annapolis, MD 21401; MISSISSIPPI The official registration and financial information of the Tuberous Sclerosis Alliance may be obtained from the Mississippi Secretary of State’s office by calling 1-888-236-6167. Registration by the Secretary of State does not imply endorsement; NEW JERSEY INFORMATION FILED WITH THE ATTORNEY GENERAL CONCERNING THIS CHARITABLE SOLICITATION AND THE PERCENTAGE OF CONTRIBUTIONS RECEIVED BY THE CHARITY DURING THE LAST REPORTING PERIOD THAT WERE DEDICATED TO THE CHARITABLE PURPOSE MAY BE OBTAINED FROM THE ATTORNEY GENERAL OF THE STATE OF NEW JERSEY BY CALLING (973) 504-6215 AND IS AVAILABLE ON THE INTERNET AT http://www.state.nj.us/lps/ca/charfrm.htm. REGISTRATION WITH THE ATTORNEY GENERAL DOES NOT IMPLY ENDORSEMENT; NEW YORK Office of the Attorney General, Department of Law, Charities Bureau, 120 Broadway, New York, NY 10271; NORTH CAROLINA FINANCIAL INFORMATION ABOUT THIS ORGANIZATION AND A COPY OF ITS LICENSE ARE AVAILABLE FROM THE STATE SOLICITATION LICENSING BRANCH AT 1-888-830-4989. THE LICENSE IS NOT AN ENDORSEMENT BY THE STATE; PENNSYLVANIA The official registration and financial information of the Tuberous Sclerosis Alliance may be obtained from the Pennsylvania Department of State by calling toll-free, within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement; VIRGINIA Virginia State Office of Consumer Affairs, Department of Agricultural and Consumer Services, PO Box 1163, Richmond, VA 23218; WASHINGTON Charities Division, Office of the Secretary of State, State of Washington, Olympia, WA 98504-0422, 1-800-332-4483; WISCONSIN a financial statement of the Tuberous Sclerosis Alliance disclosing assets, liabilities, fund balances, revenue, and expenses for the preceding fiscal year will be provided upon request; WEST VIRGINIA Residents may obtain a summary of the registration and financial documents from the Secretary of State, State Capitol, Charleston, WV 25305. Registration with any of these state agencies does not imply endorsement, approval or recommendation by any state.