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Blog Posts

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
Rare Disease and Survivor Guilt February 28, 2016
Team Rare Disease February 26, 2016
2016 Rare Disease Day $1 Challenge January 6, 2016
EPI-743 Trial Update January 5, 2016
What A Difference A Year Makes October 27, 2015
KB’s First Sales Pitch September 4, 2015
INAD: Our First Rare Disease Community September 2, 2015
Oh, but darling…what if you fly? August 27, 2015
Hope for Katherine Belle Contributions August 24, 2015
The Christmas I Thought Was My Child’s Last August 20, 2015
A Response To Our Naysayers: Rare Disease Statistics Are Absurd Because They Are Accurate August 19, 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
Dear Dora and Kanye, You Don’t Have to Stand to Dance! December 1, 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
Thanks For Your Support! October 14, 2014
Elisabeth Jensen has Hope for KB September 20, 2014
Hope for Katherine Belle: A Mother’s Ice Bucket Challenge September 1, 2014
A Letter to Myself – One Year Ago Today August 30, 2014
Determination August 29, 2014
Want to Make a Donation? August 24, 2014
Dear Congress August 19, 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
Dance! Dance! February 4, 2014
A Mother’s Death and Resurrection January 29, 2014
Faith. Hope. Love. January 27, 2014

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