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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!!

RYAN's Road
Posted on July 17, 2014
#ThrowbackThursday: Guess the TSC Athlete 

BY: NOVARTIS PHARMACEUTICALS CORPORATION

Today, we’re traveling way back in time for #ThrowbackThursday (#TBT)! Can you guess which TSC athlete is photographed in this picture? 

We’ll give you a hint: he just took home the silver medal at the recent Washington State soccer tournament. 

You got it – it’s Michael Jorski!

Be sure to visit our page on future Thursdays for more #TBT fun!

#ThrowbackThursday: Guess the TSC Athlete

BY: NOVARTIS PHARMACEUTICALS CORPORATION

Today, we’re traveling way back in time for #ThrowbackThursday (#TBT)! Can you guess which TSC athlete is photographed in this picture?

We’ll give you a hint: he just took home the silver medal at the recent Washington State soccer tournament.

You got it – it’s Michael Jorski!

Be sure to visit our page on future Thursdays for more #TBT fun!

RYAN's Road
Posted on July 10, 2014
#ThrowbackThursday: Guess the TSC Athlete

BY: NOVARTIS PHARMACEUTICALS CORPORATION

We’re time traveling again this week for #ThrowbackThursday (#TBT)! Look at that great smile coming from a baby TSC athlete. Can you guess who it is? 

It’s Whitney Lackey! She’s already a Special Olympics, bocce-playing star and did a great job competing at the Special Olympics USA Games on June 16-20! 

Happy #TBT!

#ThrowbackThursday: Guess the TSC Athlete

BY: NOVARTIS PHARMACEUTICALS CORPORATION

We’re time traveling again this week for #ThrowbackThursday (#TBT)! Look at that great smile coming from a baby TSC athlete. Can you guess who it is?

It’s Whitney Lackey! She’s already a Special Olympics, bocce-playing star and did a great job competing at the Special Olympics USA Games on June 16-20!

Happy #TBT!

RYAN's Road
Posted on July 2, 2014

Soccer Success!

BY: MICHAEL JORSKI

Hi everyone! I wanted to share this video of me playing soccer at the Washington State soccer tournament I competed in May. Even though it rained a little bit, I’m glad we could still play!

Go Kent Storm!!

RYAN's Road
Posted on June 26, 2014

#ThrowbackThursday: Ryan Groves Wins the Gold!

BY: NOVARTIS PHARMACEUTICALS CORPORATION

In honor of #ThrowbackThursday (#TBT), check out this photo of Ryan Groves competing at last year’s Special Olympics Michigan Summer Games, where he took home the gold medal in the softball throw. When talking about his successes in the Special Olympics and everything he’s overcome to compete, Ryan said, “I have TSC, but it does not have me.” Ryan returned to the Special Olympics Michigan Summer Games again this year. Ryan inspires all of us over at Novartis by pursuing his dreams despite the challenges of living with TSC.

Happy #ThrowbackThursday!

RYAN's Road
Posted on June 23, 2014
Update on the USA Games!

BY: WHITNEY LACKEY

The Special Olympics USA Games just wrapped up so I wanted to share a quick update. The Games were really fun and I’m so glad I got to travel to NJ and represent Team Tennessee in bocce. There were so many people watching us play!! Check out this photo of me after the medal ceremony!

I took home the bronze medal in doubles and Team Tennessee took home the silver medal! I also competed in the singles competition and got fourth place! 

This was such a cool experience and I think people with TSC like me should think about participating in Special Olympics or taking part in other activities that make them happy. Of course, you have to make sure to visit your doctor regularly for check-ups but Special Olympics is one of my favorite things! 

I’m so proud of my team and all of the other Special Olympics athletes who competed at the USA Games, and can’t wait to compete in a Special Olympics event again soon!

Update on the USA Games!

BY: WHITNEY LACKEY

The Special Olympics USA Games just wrapped up so I wanted to share a quick update. The Games were really fun and I’m so glad I got to travel to NJ and represent Team Tennessee in bocce. There were so many people watching us play!! Check out this photo of me after the medal ceremony!

I took home the bronze medal in doubles and Team Tennessee took home the silver medal! I also competed in the singles competition and got fourth place!

This was such a cool experience and I think people with TSC like me should think about participating in Special Olympics or taking part in other activities that make them happy. Of course, you have to make sure to visit your doctor regularly for check-ups but Special Olympics is one of my favorite things!

I’m so proud of my team and all of the other Special Olympics athletes who competed at the USA Games, and can’t wait to compete in a Special Olympics event again soon!