# Volunteer needed to clinical trial for FA

**URL:** https://forum.livingwithataxia.org/t/volunteer-needed-to-clinical-trial-for-fa/2774
**Category:** News, Research, and Clinical Trials
**Created:** [June 1, 2015, 3:48pm UTC](https://forum.livingwithataxia.org/t/volunteer-needed-to-clinical-trial-for-fa/2774 "2015-06-01T15:48:18Z")
**Posts on this page:** 6
**Page:** 1

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### Author: ![sunny8088](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/sunny8088/32/1698_2.png) [@sunny8088](https://forum.livingwithataxia.org/u/sunny8088)
#### Post date: [June 1, 2015, 3:48pm UTC](https://forum.livingwithataxia.org/t/volunteer-needed-to-clinical-trial-for-fa/2774/1 "2015-06-01T15:48:18Z")

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[https://www.clinicaltrials.gov/ct2/show/NCT01898884](https://www.clinicaltrials.gov/ct2/show/NCT01898884)

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### Author: ![Alan\_T](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/alan_t/32/31_2.png) [@Alan\_T](https://forum.livingwithataxia.org/u/Alan_T)
#### Post date: [June 1, 2015, 5:52pm UTC](https://forum.livingwithataxia.org/t/volunteer-needed-to-clinical-trial-for-fa/2774/2 "2015-06-01T17:52:29Z")

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Dear friends,

Hope this finds you all doing well. Wanted to let you know that we are within a single participant of being able to complete another FA clinical trial effort. This is a phase I trial designed to evaluate dosage and safety of VP20629, a naturally occurring small molecular weight drug compound aimed at preventing oxidative stress to improve mitochondrial function in FA patients. VP20629 was initially advanced by ViroPharma and was known as OX-1. It is now being advanced by Shire Pharmaceuticals and is known as SHP622. 

 

We need just one more FA participant between the ages of 18 and 45 so we can complete the study. If you or a family member have FA and are between 18 and 45 years of age, please consider participating. Please read the notice, below, and consider contacting one of the three trial sites to express interest.

If you are one of the 50 people who already participated in the Phase 1 study for VP20629/SHP622, we thank you for your time and are grateful for your help in pushing this research forward. We are now asking for the attention and consideration of **1 more person (ages 18-45) to participate** in the final cohort to complete the study at one of three sites -- Emory University in Atlanta, the University of South Florida in Tampa, or the University of Iowa. Of note, this study requires a 10-day in-patient stay at the study site.

This is a Phase 1 study designed to evaluate dosage and safety of VP20629/SHP622. If you are interested and available to participate, please consider contacting the study coordinator at one of the sites listed below to help us complete this study.

Warm regards,

Ron

**VP20629 – Safety and Pharmacology Study of VP20629 in Adults With FA**

Drug: SHP622 (also known as VP20629 or OX1)  
Sponsor: Shire (formerly initiated by ViroPharma)  
Specific information on inclusion and exclusion criteria is available here: [www.clinicaltrials.gov/ct2/show/NCT01898884](http://www.clinicaltrials.gov/ct2/show/NCT01898884).

Please call or email one of the sites below if you are interested in participating:

 

**Emory University, Atlanta, GA**  
Principal Investigator: Dr. George Wilmot  
Coordinator: Rebecca McMurray, **\*NOTE New Phone Number\*** Tel: 404-■■■■■■■■; Email: ■■■■■■■■■■■■■■■■■  
Emory study ad: [www.curefa.org/\_pdf/EmoryTrialVP20629.pdf](http://www.curefa.org/_pdf/EmoryTrialVP20629.pdf)

 

**University of South Florida, Tampa, FL**  
Principal Investigator: Dr. Theresa Zesiewicz  
Coordinator: Kevin Allison, Tel: (813) ■■■■■■■■; [email:■■■■■■■■■■■■■■■■■■■■■](mailto:email%%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0%E2%96%A0)

 

**University of Iowa, Iowa City, IA**  
Principal Investigator: Dr. Kathy Mathews  
Coordinator: Carrie Stephan, Tel: (319) ■■■■■■■■; email: ■■■■■■■■■■■■■■■■■■■■■■■■

Thank you for your ongoing support of clinical research in Friedreich's ataxia.

Visit [http://curefa.org/trial.html](http://curefa.org/trial.html) for more information on participating in a clinical trial for FA.

Best Regards,  
FARA Patient Registry Administrator

■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■  
tel: 484-■■■■■■■■   
[www.curefa.org](http://www.curefa.org/)

 

Ronald J. Bartek  
President  
Friedreich's Ataxia Research Alliance (FARA)  
Tel (540) ■■■■■■■■  
FARA website: [http://www.CureFA.org](http://www.CureFA.org)  
Email: ■■■■■■■■■■■■■■■  
Please register in the FARA Patient Registry at [http://www.curefa.org/registry/](http://www.curefa.org/registry/) and for e-news at [http://visitor.constantcontact.com/email.jsp?m=1101190303489](http://visitor.constantcontact.com/email.jsp?m=1101190303489)

\_\_.\_,\_.\_\_\_

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### Author: ![sunny8088](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/sunny8088/32/1698_2.png) [@sunny8088](https://forum.livingwithataxia.org/u/sunny8088)
#### Post date: [June 1, 2015, 5:57pm UTC](https://forum.livingwithataxia.org/t/volunteer-needed-to-clinical-trial-for-fa/2774/3 "2015-06-01T17:57:23Z")

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Thanks Alan

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### Author: ![Maggie](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/maggie/32/1288_2.png) [@Maggie](https://forum.livingwithataxia.org/u/Maggie)
#### Post date: [June 4, 2015, 2:39am UTC](https://forum.livingwithataxia.org/t/volunteer-needed-to-clinical-trial-for-fa/2774/4 "2015-06-04T02:39:00Z")

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Dear Dancer mom vcan you please resend your last email from ataxia in paris?? thank you!

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### Author: ![Madere\_dancermom](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/madere_dancermom/32/1324_2.png) [@Madere\_dancermom](https://forum.livingwithataxia.org/u/Madere_dancermom)
#### Post date: [June 4, 2015, 10:16pm UTC](https://forum.livingwithataxia.org/t/volunteer-needed-to-clinical-trial-for-fa/2774/5 "2015-06-04T22:16:09Z")

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Maggie, I send emails from all of our communities, and I'm afraid I don't recall this particular one. I hope that either the Discussion page or the Search box at the upper right corner can help you find what you are looking for. If anyone else recognizes which post Maggie is requesting, please leave a comment.

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### Author: ![Madere\_dancermom](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithataxia.org/madere_dancermom/32/1324_2.png) [@Madere\_dancermom](https://forum.livingwithataxia.org/u/Madere_dancermom)
#### Post date: [June 4, 2015, 10:17pm UTC](https://forum.livingwithataxia.org/t/volunteer-needed-to-clinical-trial-for-fa/2774/6 "2015-06-04T22:17:10Z")

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Wait a bit... perhaps it is this? [http://forum.livingwithataxia.org/forum/topics/ataxia-on-stage-at-doctors-2-0-you-conference-in-paris](http://forum.livingwithataxia.org/forum/topics/ataxia-on-stage-at-doctors-2-0-you-conference-in-paris)
