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News Stories & Press Releases

Local news stories contributed by our INAD Families.

Submitted by Christina Martin

One more birthday for the Martin girls, April 2015

https://www.cincinnati.com/story/news/2015/04/11/one-birthday-martin-girls/25532721/

One Family’s Journey With a Rare, Fatal Disease, April 2015

http://blog.cincinnatichildrens.org/in-the-news/one-familys-struggle-with-a-rare-disease-and-cincinnati-childrens-hope-for-the-future/

Lebanon girl, 4, dies of rare genetic disorder, August 2015

https://www.cincinnati.com/story/news/2015/08/31/lebanon-girl-dies-rare-genetic-disorder/71475262/

3-year-old with rare genetic disorder going to prom, February 2016

http://local12.com/news/local/3-year-old-with-rare-genetic-disorder-going-to-prom

Lebanon girl, 4, dies after sister succumbs to same rare disease, May 2016

http://www.cincinnati.com/story/news/2016/05/23/lebanon-girl-dies-after-sister-of-same-rare-disease/84799274/

Submitted by Katie Martin Sampson (Click here to be directed to Katie’s Personal Fundraising Page)

The plight of people who battle rare diseases, February 2016

http://myfox8.com/2017/02/28/the-plight-of-people-who-battle-rare-diseases/

Submitted by Jennifer Richard Thomson

Two Acadiana girls battle rare disease, February 2015

http://www.katc.com/story/28076206/two-acadiana-girl-battle-rare-disease 

Two girls from Louisiana, both suffering from INAD (Infantile Neuroaxonal Dystrophy), July 2015

https://youtu.be/6z8r30B-iNc

Submitted by Mary Galer Herschelman (click here to be directed to Mary’s Personal Fundraising page)

Grace Filled 5K- Sept. 5 at Hillsboro High School, September 2015

http://fox2now.com/2015/09/02/710204/

2nd Annual Grace Cup All-Star Game, June 2016

http://newschannel20.com/sports/content/2nd-annual-grace-cup-all-star-game

County Teams Prepare For Grace-Filled Tourney, July 2017

http://www.thejournal-news.net/sports/prep_sports/county-teams-prepare-for-grace-filled-tourney/article_59fb65e2-759a-11e7-a5e3-63eb90ba57c4.html

Grace is among good people of Montgomery County, January 2016

http://www.sj-r.com/article/20160109/NEWS/160109566

5K to benefit research on incurable genetic disorder, July 2017

http://www.sj-r.com/news/20170722/5k-to-benefit-research-on-incurable-genetic-disorder

Grace Race Steps Off In September, July 2017

http://www.thejournal-news.net/news/local_news/grace-race-steps-off-in-september/article_2cf22172-5f96-11e7-848c-4bfae4fd6d16.html

A Grace Filled Success, September 2017

http://www.thejournal-news.net/news/local_news/a-grace-filled-success/article_58b36eb4-91e7-11e7-8216-ebe3d07f88a5.html

Submitted by Raymond Veenman

https://www.libelle.nl/mensen/actueel/jasper-valentijn/

 

Press Releases

Retrotope initiates second patient for Compassionate Use of RT001 for an ultra-rare genetic neurological disease, Infantile Neuroxanal Dystrophy, November 2017

https://static1.squarespace.com/static/549af14ae4b004237f7bb71a/t/5a0ea1b3e4966bd1984dc50f/1510908340401/Retrotope+INAD+Patient+2+Final+Press+11-16-2017.pdf