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RYAN's Road
Posted on March 21, 2014

Houston Chronicle Highlights Steven’s Journey with TSC!

BY: Novartis Pharmaceuticals Corporation

Take a look at this great article and video (also posted on this page for easy viewing) that was published online in the Houston Chronicle reporting on Steven’s experiences living with TSC and competing in the 2013 Greater Fort Worth Area Special Olympics Bowling Competition! http://www.chron.com/sponsoredarticles/lifestyle/community/article/Overcoming-all-odds-Young-Special-Olympics-5124808.php. Go Steven!

To help spread TSC awareness, feel free to share this article online, on your Facebook or Twitter pages, and with your family and friends!

RYAN's Road
Posted on March 20, 2014

Maintaining a Support Network

BY: Mandy and Scott Striegel

TSC can affect each patient differently and symptoms can range from mild to severe. Watch this video to hear Mandy and Scott talk about the importance of building a support network and communicating with other families affected by TSC to help stay informed about the latest TSC information and cultivate emotional support.

Feel free to share this post online, on your Facebook or Twitter pages and with families and friends, to help provide more information on TSC and raise awareness.

RYAN's Road
Posted on March 12, 2014

Wednesday: Locating a TSC Specialist

BY: Novartis Pharmaceuticals Corporation

TSC can affect many different parts of the body, including the brain, kidneys, heart, lungs and skin. Manifestations of the disease vary from person to person, can take years to develop and may change over time so it is important for people with TSC to regularly visit their doctors to monitor tumors and lesion size and screen for new symptoms. Given the complexity of TSC, it is also optimal to see a doctor who specializes in the disease or is familiar with it.

Take a look at this great resource that helps people with TSC find specialists in their area based on zip code: (https://connect.secure.force.com/tsc/TSCDocFinder). To let others in your network know about this convenient tool, you can share this link on your social media pages like Facebook and Twitter.

RYAN's Road
Posted on March 10, 2014

Transitioning from Pediatric to Adult Care

BY: Mandy and Scott Striegel

When people with TSC enter adulthood, they may need to transition from a centralized pediatric TSC specialist to a multidisciplinary team of adult physicians to manage the diverse manifestations of the disease and as a result, they may face a gap in care as they identify new doctors who may or may not be familiar with TSC. In this clip, Mandy and Scott Striegel discuss their experience with Steven’s transition into adulthood and how they approached some of the difficulties they faced.

To help increase understanding about the transition into adulthood for people with TSC, feel free to share this post online, on your Facebook or Twitter pages and with families and friends.

RYAN's Road
Posted on March 6, 2014

A Message to Novartis regarding the TSC Special Olympics Program

BY: Mandy and Scott Striegel

Mandy and Scott deliver a message to Novartis about their efforts to raise awareness of TSC and support for the TSC community through the TSC Special Olympics program. Feel free to share this post online, on your Facebook or Twitter pages and with families and friends, to help provide more information on TSC and raise awareness.

RYAN's Road
Posted on March 4, 2014

Never Let TSC Hold You Back!

BY: Andy Maldonado

Andy Maldonado, Steven’s coach during the 2013 Greater Fort Worth Area Special Olympics Bowling Competition, talks about how Steven inspires him with his strong work ethic and positive attitude. Take a look and feel free to share this post online, on your Facebook or Twitter pages, and with family and friends, to help inspire others with TSC to participate in activities that they are passionate about.

RYAN's Road
Posted on February 28, 2014

Friday: Today is Rare Disease Day!

BY: Novartis Pharmaceuticals Corporation

Today on Rare Disease Day, Novartis joins with others around the world to support those living with rare diseases, such as TSC, and to raise awareness of these conditions. Novartis has a long heritage of commitment to rare diseases, based on addressing patients’ needs through education and collaboration with the community. You too can participate in Rare Disease Day by sharing information about TSC or other rare diseases that affect you. For example, share this video (http://bit.ly/12cYcBL) with your social networks to get the word out about TSC today.

RYAN's Road
Posted on February 25, 2014

A Message to the Newly Diagnosed

BY: MANDY STRIEGEL

Mandy provides her advice to parents and families who may know someone that has been newly diagnosed with TSC. Feel free to share this post online, on your Facebook or Twitter pages and with families and friends, to help provide more information about TSC.

RYAN's Road
Posted on February 21, 2014
Show Your Support on Rare Disease Day!

BY: Novartis Pharmaceuticals Corporation

Please join Novartis in supporting those affected by rare diseases such as TSC, by participating in Rare Disease Day on February 28th! Next week, people around the world will band together to raise awareness about rare diseases and cultivate support for those impacted by the day-to-day challenges of living with a rare disease. You can help by sharing this Rare Disease Day image on your social media pages to get the word out and also by educating those around you about TSC or other rare conditions that affect you and your family.

Show Your Support on Rare Disease Day!

BY: Novartis Pharmaceuticals Corporation

Please join Novartis in supporting those affected by rare diseases such as TSC, by participating in Rare Disease Day on February 28th! Next week, people around the world will band together to raise awareness about rare diseases and cultivate support for those impacted by the day-to-day challenges of living with a rare disease. You can help by sharing this Rare Disease Day image on your social media pages to get the word out and also by educating those around you about TSC or other rare conditions that affect you and your family.

RYAN's Road
Posted on February 18, 2014

Keep Looking Forward

BY: SCOTT STRIEGEL

In this clip, Scott shares what he’s learned from Steven and the message he would send to someone affected by TSC. Take a look and feel free to share this post online, on your Facebook or Twitter pages, and with family and friends.