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RYAN's Road
Posted on September 29, 2014

TSC Affects Each Person Differently

BY: BRENT LACKEY

TSC can affect many different parts of the body, including the brain, kidneys, heart, lungs and skin. Watch this clip to hear Brent discuss how TSC manifestations can vary from person to person. To help raise awareness of TSC, share this post on your Facebook or Twitter pages, and with family and friends.

RYAN's Road
Posted on September 24, 2014

Give It a Try!

BY: WHITNEY LACKEY

While competing in bocce at the USA Games in New Jersey, Whitney talks about what motivates her to compete in the Special Olympics and encourages others to give it a try. Feel free to reblog this post, or share it on your Facebook or Twitter pages and with families and friends, to inspire those impacted by TSC and help raise awareness.

RYAN's Road
Posted on September 17, 2014

MARK YOUR CALENDARS!

BY: NOVARTIS PHARMACEUTICALS CORPORATION

Mark your calendars – the TSC Caregiver Summit is taking place during National Caregiver Month on November 11th, 2014.

We’re inviting TSC Caregivers across the country to join us for a virtual 90-minute summit where they can hear perspectives and insights about TSC from fellow caregivers, the advocacy community as well as a medical expert. The discussion will touch on common challenges faced by TSC caregivers and there will be time dedicated for Q&A. We encourage you register today by visiting: http://login.xyvid.com/register/TSCcaregiver.

Don’t miss the chance to participate in this informative event!

RYAN's Road
Posted on September 8, 2014
Interested in Learning More About TSC?

BY: Novartis Pharmaceuticals Corporation

Interested in learning more about TSC? If you’re a teen or adult living with TSC, take a look through these resource guides (http://bit.ly/1jpcfwW), which focus on some of the common medical, social and emotional topics related to TSC.

TSC is a rare disease that 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.

Remember to also visit the Facing TSC website (http://bit.ly/1ehe2rg). Feel free to share these resources on your Facebook or Twitter pages, and with families and friends, to help spread awareness of TSC.

Interested in Learning More About TSC?

BY: Novartis Pharmaceuticals Corporation

Interested in learning more about TSC? If you’re a teen or adult living with TSC, take a look through these resource guides (http://bit.ly/1jpcfwW), which focus on some of the common medical, social and emotional topics related to TSC.

TSC is a rare disease that 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.

Remember to also visit the Facing TSC website (http://bit.ly/1ehe2rg). Feel free to share these resources on your Facebook or Twitter pages, and with families and friends, to help spread awareness of TSC.

RYAN's Road
Posted on September 8, 2014
TSC Talk: Did You Know?

BY: NOVARTIS PHARMACEUTICALS CORPORATION

Did you know Whitney, Ryan, Steven and Michael are four of the up to 50,000 people in the U.S. living with TSC? Since symptoms associated with TSC can change over time, it’s important for people with TSC, including these four TSC athletes, to visit their doctors regularly to monitor tumor and lesion size and to screen for new symptoms. Check out this animated video on the Novartis YouTube channel that explains TSC and the TSC patient journey: http://bit.ly/12cYcBL. 

Novartis created this video to spread awareness about TSC and educate about this rare disease. We have a heritage of commitment to rare diseases, including TSC, and are dedicated to understanding and improving the lives of people with TSC through education and collaboration with the TSC community.

Feel free to share these resources on your Facebook or Twitter pages, and with families and friends, to help spread awareness of TSC.

TSC Talk: Did You Know?

BY: NOVARTIS PHARMACEUTICALS CORPORATION

Did you know Whitney, Ryan, Steven and Michael are four of the up to 50,000 people in the U.S. living with TSC? Since symptoms associated with TSC can change over time, it’s important for people with TSC, including these four TSC athletes, to visit their doctors regularly to monitor tumor and lesion size and to screen for new symptoms. Check out this animated video on the Novartis YouTube channel that explains TSC and the TSC patient journey: http://bit.ly/12cYcBL.

Novartis created this video to spread awareness about TSC and educate about this rare disease. We have a heritage of commitment to rare diseases, including TSC, and are dedicated to understanding and improving the lives of people with TSC through education and collaboration with the TSC community.

Feel free to share these resources on your Facebook or Twitter pages, and with families and friends, to help spread awareness of TSC.

RYAN's Road
Posted on August 26, 2014
Calling All TSC Caregivers!

BY: NOVARTIS PHARMACEUTICALS CORPORATION

Attention TSC Caregivers: Please join us this November during National Caregiver Month for the TSC Caregiver Summit (date TBC) – an online educational event for the TSC community. This virtual 90-minute summit brings together fellow TSC caregivers, the advocacy community and a medical expert to share insights and personal experiences with TSC.

To register for the webcast and receive updates regarding the event, please visit: http://login.xyvid.com/register/TSCcaregiver.

If you know someone who also cares for an individual with TSC, please help spread the word by reblogging this post or sharing it on your social media pages.

Calling All TSC Caregivers!

BY: NOVARTIS PHARMACEUTICALS CORPORATION

Attention TSC Caregivers: Please join us this November during National Caregiver Month for the TSC Caregiver Summit (date TBC) – an online educational event for the TSC community. This virtual 90-minute summit brings together fellow TSC caregivers, the advocacy community and a medical expert to share insights and personal experiences with TSC.

To register for the webcast and receive updates regarding the event, please visit: http://login.xyvid.com/register/TSCcaregiver.

If you know someone who also cares for an individual with TSC, please help spread the word by reblogging this post or sharing it on your social media pages.

RYAN's Road
Posted on August 18, 2014
A Father’s Perspective

BY: BRENT LACKEY

Our daughter Whitney was first diagnosed with TSC at two months old. At that time, we had never heard of the disease before and there was very little information or resources available. 

The first thing my wife Sharon did was run to the library to read about this rare and complex disease. Sharon helped our family become more informed about TSC manifestations, and the prognosis and management strategies available so we could all better understand how it would affect our daughter’s life. I truly admire my wife’s courage and commitment – it has made all the difference for Whitney and our family.

Being a part of Special Olympics has been an amazing journey for our family over the years and I encourage you to read an article published on Parents.com to learn more about our experiences: http://www.parents.com/blogs/parents-perspective/2014/06/13/the-parents-perspective/raising-awareness-through-the-usa-special-olympics. Feel free to pass this article along to your family and friends to help learn more about TSC and our journey.

A Father’s Perspective

BY: BRENT LACKEY

Our daughter Whitney was first diagnosed with TSC at two months old. At that time, we had never heard of the disease before and there was very little information or resources available.

The first thing my wife Sharon did was run to the library to read about this rare and complex disease. Sharon helped our family become more informed about TSC manifestations, and the prognosis and management strategies available so we could all better understand how it would affect our daughter’s life. I truly admire my wife’s courage and commitment – it has made all the difference for Whitney and our family.

Being a part of Special Olympics has been an amazing journey for our family over the years and I encourage you to read an article published on Parents.com to learn more about our experiences: http://www.parents.com/blogs/parents-perspective/2014/06/13/the-parents-perspective/raising-awareness-through-the-usa-special-olympics. Feel free to pass this article along to your family and friends to help learn more about TSC and our journey.

RYAN's Road
Posted on August 14, 2014

Thursday: Calling All Parents: Check Out This Article About Our Journey with TSC!

BY: SHARON LACKEY

I’m so excited to share a SheKnows.com article about our family’s journey with TSC and Whitney’s participation in the Special Olympics USA Games. Check it out: http://www.sheknows.com/parenting/articles/1040111/teen-competes-in-special-olympics-despite-genetic-condition.

Feel free to share this article with your family and friends to help raise awareness about TSC and to encourage those affected by TSC to participate in activities they are passionate (after checking with their doctors first).

RYAN's Road
Posted on August 13, 2014

Wednesday: We Did It!

BY: SHARON LACKEY

Whitney’s road to the 2014 Special Olympics USA Games has officially ended, and my husband, Brent and I could not be more proud of everything she has accomplished.

Whitney began participating in the Special Olympics because she loves all kinds of sports, but we never dreamed that one day Whitney would have the opportunity to compete at the National level. When Whitney was first diagnosed with TSC at the age of two months, the doctors told us that she would probably never walk or talk so you can imagine how proud we were to see her competing at the USA Games.

On top of her athletic achievements, it was a testament to Whitney’s growing independence to have her stay in the dorm rooms on her own and make many new friends during our trip. Of course she did all of this with her ever-positive attitude. Whitney has overcome so much to get to where she is today – she is our hero and she continues to inspire us every day.

RYAN's Road
Posted on August 11, 2014

Back Home in Tennessee!

BY: WHITNEY LACKEY

Now that I’m back home in Tennessee, I wanted to share a post to tell everyone about my trip to New Jersey for the USA Games. I’m so happy I had the chance to compete with all of the different athletes at the Games because I met so many people and made a lot of new friends!

One of the coolest parts of my trip was staying in the dorms with my teammates. The dorm rooms were at a school called Rider University and we stayed there without our parents. We were just like college kids! Plus, I was even in my local newspaper in Tennessee for playing bocce at the USA Games. Check it out here: http://www.lebanondemocrat.com/article/lebanon/425331. The article talks about my TSC and why Special Olympics is so fun for me!

Come back soon to see some videos from me and my family at the USA Games!!