Tyler's Hope for a Dystonia Cure
  • Tyler's Story
    • Progressional Diary
  • About Us
    • Centers of Excellence >
      • University of Florida's Norman Fixel Institute for Neurological Diseases
      • Duke Health
    • About Dystonia
    • Meet the Team
    • The Research
    • Our Leadership
    • Media Coverage
  • Events
    • Center of Excellence at Duke Health Ribbon Cutting
    • Cajun Crawfish Boil
    • Think Tank
    • The Hope Weekend
    • Season of Hope 5K/15K
    • Webinars
  • Support Us
    • Shop
    • The Hope Brew Coffee
    • Planned Giving
    • Send checks
    • Amazon Smile
    • Giving Tuesday
  • Get Involved
    • Donate Now
    • Add a Signature
    • Volunteer Registration
    • Tyler's Hope Tuesdays
    • Social Media >
      • Facebook
      • Twitter
      • Instagram
  • Latest News
  • DIPR - Dystonia International Patient Registry
  • Blog

Living with Dystonia - 2018

5/9/2018

3 Comments

 
Tyler has had his struggles the last 6 months with some pain and pulling especially more so in his face. However, lately he seems to be in a good groove. We purchased a new house that has a separate “apartment” for Tyler to live in and everything is very friendly for disabilities. It gives Tyler even more independence and I see him taking more responsibilities and becoming more of an adult. Everything is on one floor and the main house has a chair lift for him to easily come see us or get a good meal. He can do his laundry and other things but of course we are not aloud in his place unless invited. He took this semester off of school and has been working with the InterMed group as well as working on his videography and photography at Tyler Staab Media. I was able to spend some good father son time with him in Charleston last week when Tyler came to the fundraiser we held there.

Samantha is in her junior year at Oak Hall high school and continues to get very good grades. She has taken advantage of the new house and had many friends over to swim, shoot pool, play bocce ball, or just hang out. She has some really good friends on the lacrosse team and supports them by going to all the games. Doesn’t talk to your dad too much about what college she’s going to attend but at least she’s planning. She is beautiful and mature and very smart. Lately she has had some issues with her memory so she is trying to get in to check for DBS settings and batteries.

Luke just finished his middle school lacrosse season and they won the bell by finishing the season undefeated. He takes no break from lacrosse is he has to travel teams he now is playing for. 
3 Comments

    Archives

    January 2023
    January 2021
    July 2019
    May 2018
    December 2017
    November 2017
    October 2017
    September 2017
    May 2017
    December 2016
    October 2016
    July 2016
    December 2015
    September 2015
    March 2015
    January 2015
    December 2014

    RSS Feed

Location:
13301 US Hwy 441
Alachua, FL 32615
​
(Located inside The InterMed Group's Corporate Office)

Mission Statement

Tyler's Hope Foundation was established to advance research for a cure, discover effective treatments and to promote awareness and education of DYT1 Dystonia. 

​
​501c3    20-3733312



Contact Us

  • Tyler's Story
    • Progressional Diary
  • About Us
    • Centers of Excellence >
      • University of Florida's Norman Fixel Institute for Neurological Diseases
      • Duke Health
    • About Dystonia
    • Meet the Team
    • The Research
    • Our Leadership
    • Media Coverage
  • Events
    • Center of Excellence at Duke Health Ribbon Cutting
    • Cajun Crawfish Boil
    • Think Tank
    • The Hope Weekend
    • Season of Hope 5K/15K
    • Webinars
  • Support Us
    • Shop
    • The Hope Brew Coffee
    • Planned Giving
    • Send checks
    • Amazon Smile
    • Giving Tuesday
  • Get Involved
    • Donate Now
    • Add a Signature
    • Volunteer Registration
    • Tyler's Hope Tuesdays
    • Social Media >
      • Facebook
      • Twitter
      • Instagram
  • Latest News
  • DIPR - Dystonia International Patient Registry
  • Blog