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
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    • Donate Now
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    • Volunteer Registration
    • Tyler's Hope Tuesdays
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July 13, 2019

7/15/2019

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July 1st was the first day for patients to be seen at the new UF Fixel Institute and Tyler was the first patient to be seen. The institute is also home of the first dedicated Dystonia Center which incorporates compassionate clinical care and research focused on Dystonia.  Tyler is currently doing work with InterMed and helps with whatever needs we have. He is living in an apartment behind us and attends lots of car shows. Tyler has had batteries replaced again this year but the surgeries went well.
 
Samantha just had her second battery replacement surgery in 6 months and although the surgery went well we are keeping an eye on the area for infections.
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She is scheduled to go with St Michelle to visit the University of Alabama this week before her orientation and start of school the first week of August. She will be in the nursing program.
 
Luke is starting high school this year and is going to a new school - Oak Hall Academy. He leaves soon to participate in the UNC team camp for high school teams. He is working out and eating right. He is still symptom free of Dystonia but also continues to be one of the most ardent supporters of Tyler’s Hope and his siblings.
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Location:
13301 US Hwy 441
Alachua, FL 32615
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(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. 

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​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