Click on any of the links below for the full article or video.
Jake & Claire are committed to raising awareness about Friedreich's Ataxia.  When Jake was diagnosed, he said that when people ask why he'll need a wheelchair, he wants to reply "FA" and have them nod with understanding.  The links below are some of our efforts to educate and inform.

NIH 2022 BRAIN Initiative Challenge:
Ethical Considerations of
​Brain Technologies
by Jake Juip
​1st Place Winner

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Shaped by his experiences as a volunteer participant in clinical research, Jake shares his views about the need for researchers to act boldly and swiftly. Working together with urgency, transparency, and mutual respect, both patients and researchers will pioneer breakthroughs that make science feel like magic.
​He was honored to win first place for his 2022 submission.

NIH Eye on the Future
2022 Video Contest
by Claire Juip
​Honored Awardee

When the National Eye Institute asked high school students to discuss their favorite scientific breakthroughs, Claire described a breakthrough she hopes to see:
 Cure for Friedreich's Ataxia
Claire was honored to visit the NIH in Bethesda, MD where she toured the research facility, dissected a cow's eye, and had the opportunity to network with top NIH scientists. While at the NIH, Claire discovered that she has an rare superpower: she can see color in a sodium room. Who knew?!

MHSAA Track & Field
100M & 200M
State Champion!

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In 2022, the Michigan High School Athletic Association (MHSAA) added wheelchair events for Track & Field. 
Jake competed with his high school track team, University Liggett School.

"This is our FAmily" : Meet the Juips
​FARA Energy Ball Video 2021

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Part of FARA's mission is to marshal the resources needed to cure FA by fundraising, and the Energy Ball is the community's largest fundraiser. Our family was honored to be featured in the 2021 FARA Energy Ball Video. 

United States Senate passes bipartisan National Ataxia Awareness Day of 2020 resolution 
November 2020

In November 2019, Jake joined representatives from FARA and NAF on Capitol Hill to educate U.S. Senators about the ataxias.  He asked for support for a national resolution recognizing a National Ataxia Awareness Day.  After a year of advocacy, the resolution passed on the floor of the U.S. Senate!

Grosse Pointe News
October 21, 2020

"An Inspiration and a Blessing"
Joe Smith, head coach of University Liggett School’s cross-country team, said he gets excited every time he sees Jake Juip’s “bike flag coming around the corner.”
Juip was inspired to reach out to the coach to ask if he could practice with the team after seeing runners while he was out for a ride on his recumbent trike.
Smith not only agreed to have Juip practice with the team, but welcomed him to compete in meets as well....

International Ataxia Research Conference
FARA Interview Series
​November 2019​

Every two years, the world's leading ataxia researchers come together to share their knowledge and to foster collaborative discovery at the IARC. Patients and parents are very interested in this high level science, so FARA created a Behind the Scenes Interview Series where the scientists chat about their research in a discussion that's approachable for a general audience. Randy and the intrepid Kyle Bryant were the charming hosts for the series. 

WXYZ
March 17, 2018

We're grateful that both Kroger and Keenan Smith support the MDA!

Grosse Pointe Times
March 13, 2018

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From shoppers to advocates, Jake & Claire enjoyed motivating our local Kroger cashiers to be the top Shamrock store in our district.

Grosse Pointe Times
November 20, 2017

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Claire was invited to be the Grand Marshal of Grosse Pointe's Santa Claus Parade. Our float featured two messages that are near & dear to our family:
#ChooseKind
#CureFA

NIH Director's Blog
October 10, 2017

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It was the honor of a lifetime to visit Dr. Francis Collins at the incredible NIH.  His personal accomplishments and the work of everyone at NIH gives us so much HOPE!

Washington Post
September 11, 2017

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Claire had the unbelievable opportunity to meet the author of Wonder, R.J. Palacio.  Here's the story...

Friedreich's Ataxia News
​August 30, 2017

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Grosse Pointe News
June 15, 2017

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On the heels of her Letters About Literature national award, Claire was featured in our local paper as the Pointer of Interest.
(Pages 1A, 4-5A)

Detroit Free Press
June 5, 2017

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Claire won the Library of Congress' Letters About Literature contest for Michigan & the entire USA.  Such an honor!

Grosse Pointe Times
May 30, 2017

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Our incredible St. Paul community donated all of the proceeds from the 2017 annual Fun Run to FA research.

Grosse Pointe Times
December 7, 2016

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When Jake was diagnosed with FA, our entire community asked how they could help. 
The answer: fundraise for research.
We hosted an Opening Night Movie Fundraiser, and were overwhelmed by the support.

Oakland Press
December 2, 2016

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This article helped publicize our first annual Opening Night movie fundraiser.