Walk Info:

SATURDAY MAY 21, 2011

EB Rains Park 11701 Community Center Dr., Northglenn, CO

Registration is at 11 am; 2 Mile Walk begins at noon.

Register online: http://www.firstgiving.com/tsalliance - click "Register for an event", find the Northglenn, CO Walk and follow the directions from there.

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Thank you for taking the first step in supporting this great cause!  It has been a God send for Haley and many families, like mine, that suffer from Tuberous Sclerosis Complex.

 

 

What’s Haley been up to? Check it out…

Haley is now 13 years old and becoming quite young lady. She communicates when she is very happy about something and she objects how you’d expect a teenager to object; she’s no mystery there, but still is nonverbal. She continues to have profound communication delays and is surrounded by a wonderful team that is working diligently with Haley on her communication skills and she is doing GREAT! She still suffers from daily seizures. Her autism and behaviors continue to dictate much of her life.......she works all day at school with an aide and is seen by an ABA therapist about 8 hours a week, she’s out in the community quite with a therapist to help advance her skills and help her to be the best Haley she can be! She still loves music, jumping on the tramp, relaxing in the sun as well as in water; she loves watching “A Bug’s Life” from time to time and enjoys spending time with her families! She is such a great kid with many things on her mind and turning into a sweet young lady. It goes without saying that we have ongoing challenges with her, but she continues to be our ray of light!

The TS Alliance and research worldwide is making amazing strides. Haley is actually on an experimental drug right now that is TREATING TS....not just her epilepsy, but her disease....pretty incredible stuff. Discoveries have been made in tumor suppression, m-TOR pathway regulation, and genetics that will lead to even more awesome discoveries. Researchers in the field of epilepsy, autism, cancer, diabetes, and other genetic disorders are watching TS research with huge interest. We are getting there.....and all of you that have supported our walks and endeavors in the past have made that possible.

Haley is such an inspiring young lady and we know that she has touched so many of your hearts. If you are interested in walking with us on May 21st, please feel free to email us for details. We'd love to have you join us!! Help us continue to help Haley and 50,000 other Americans living with Tuberous Sclerosis Complex like her. We really can make a difference.

God Bless,
Jim & Tiffany Lynch
 

“Spoken words can be like deep water, but wisdom is like a flowing stream” Proverbs 18:4, NCV