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Vote for David Faughn to win 2019 Eagle Rare Life Award

David Faughn 2019 Eagle Rare Life Nominee

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Hope for Katherine Belle

A Father’s Plea

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Blog Posts

Rare Disease Day 2019 February 28, 2019
NUBPL: Novel Disease Discovery to Community February 26, 2019
Fate’s Waiting Room February 25, 2019
David Faughn 2019 Eagle Rare Life Award Nominee November 5, 2018
Today is Kentucky Gives Day 2018 May 22, 2018
A Father’s Plea January 22, 2018
The Pennsylvania Gazette #Hope4KB Cover Story January 10, 2018
#GivingTuesday November 28, 2017
Mitochondrial Disease Awareness Week 2017 September 1, 2017
The Liebster Award August 25, 2017
Katherine Belle Walking, Age 6 August 24, 2017
2017 Bi-Annual Report July 31, 2017
Kentucky Gives Day 2017: Support NUBPL Foundation April 17, 2017
Two NUBPL Families Meet For First Time, 2,000 miles apart March 21, 2017
1st NUBPL Foundation Fundraiser March 21, 2017
Rare Bourbon for Rare Disease Fundraiser February 9, 2017
Rare Disease Day 2017 February 6, 2017
2016: A Year in Review December 22, 2016
Mitochondrial Disease Awareness Week (September 18-24) September 21, 2016
Tips for Successful Legislative Advocacy August 23, 2016
Five June 28, 2016
Next Stop: Kindergarten May 19, 2016
Kentucky’s Children Need Your Help – Senate Bill 18 April 3, 2016
3 Things I Want To Tell the Mom Receiving A Rare Diagnosis April 1, 2016
5 Tips for Appealing Genetic Testing March 3, 2016
To the Parents Just Receiving a Rare Diagnosis March 2, 2016
Team Rare Disease February 26, 2016
EPI-743 Trial Update January 5, 2016
The Christmas I Thought Was My Child’s Last August 20, 2015
Mitochondrial Disease Explained for Non-Scientists August 14, 2015
Exhale August 13, 2015
What is EPI-743? August 10, 2015
Four July 9, 2015
Summer Update July 3, 2015
Rare Disease: A Photographic Journal to Diagnosis May 12, 2015
What is NUBPL? May 12, 2015
NUBPL – Mitochondrial Complex 1 May 7, 2015
NUBPL Gene – Mito Complex 1 (Diagnosed) March 31, 2015
Her Knight Father-Daughter Dance February 9, 2015
Be Mine January 31, 2015
#Hope4KB January 28, 2015
A Magical Vacation January 25, 2015
A Year in Review (2014) January 6, 2015
Merry Christmas December 12, 2014
How am I doing? (Glenda) December 2, 2014
How am I doing? November 20, 2014
Keep Churning November 15, 2014
Robin Williams and Rare Disease November 12, 2014
Connected To The Past November 7, 2014
Fall Updates October 30, 2014
A Letter to Myself – One Year Ago Today August 30, 2014
Determination August 29, 2014
Now What? August 13, 2014
How Social Media Impacts Scientific Research July 19, 2014
Around We Go July 17, 2014
Three July 11, 2014
Happy Fourth of July! July 4, 2014
Back Where We Started July 1, 2014
Mother’s Day – What I See May 7, 2014
Derby Weekend May 5, 2014
Happy Easter April 21, 2014
Good News Friday April 11, 2014
Spring Updates April 5, 2014
Rare Diseases: Together We Are Strong February 25, 2014
Coping and Advocacy February 11, 2014
A Father’s Love February 4, 2014
A Mother’s Death and Resurrection January 29, 2014
Faith. Hope. Love. January 27, 2014

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