Walking for Fiona & Friends - Let's Fight NKH Together!

For: Fighting for Fiona & Friends Fund
South Bend, IN
Organizer: Sean Patrick Nohelty
Walking for Fiona & Friends - Let's Fight NKH Together! (Fighting for Fiona & Friends Fund)
$32,550
of $67,000 goal.
Raised by 202 donors
48% Complete

The Story

I love my alma mater and I like physical challenges, especially those for a cause greater than one’s self or personal accomplishment. So I say:

WALK WITH PURPOSE! – “WALKING FOR FIONA & FRIENDS”

In 1842, the Rev. Edward Sorin, C.S.C founded the University of Notre Dame to be a “force for good in the world”. 2017 marks the 175th anniversary of his 300+ mile trek on foot from Vincennes to South Bend, Indiana, accompanied by seven Holy Cross brothers. In commemoration of this milestone, I am joining hundreds of other ‘pilgrims’ from August 22-26 for a 5-day walk covering 67 miles of the “Notre Dame Trail”.

Following in the footsteps of these visionary giants who dreamt and acted boldly in the face of doubt and adversity, I have decided to conjoin my love of my alma mater with a cause near and dear to me and my family – supporting Notre Dame’s Boler-Parseghian Center for Rare & Neglected Diseases (CRND).

Did you know that there are over 7,000 documented rare diseases that affect over 300 million people? In its 10+ year history, CRND has been laser-focused on fighting a handful of these, most recently taking on NKH (Non-Ketotic Hyperglycinemia) in 2015. My niece Fiona was diagnosed with NKH a few days after her birth in 2006 and passed away just shy of her 3rd birthday. Little did I know then that approximately 1 in every 60,000 babies is born with NKH, a rare genetic disorder that impacts the body’s ability to break down glycine. Many kids live for just a few hours, days, months or years, if they are lucky.

Dr. Kasturi Haldar and her dedicated team of researchers at CRND however are fighting back, making headway on better understanding this disease in order to develop advanced therapies that improve the quality of life. And though Fiona succumbed after her long fight, my family and I have picked up where she left off, creating the “Fighting For Fiona & Friends” fund to help sustain their work.

Join me in the fight as I walk with purpose along 67 miles of the “Notre Dame Trail”. I will be “Walking for Fiona & Friends”. Your encouragement and support means everything to me. Come out and walk with me, write me, spread the word about NKH, and if you will, help me raise $67,000 for 67 miles via becoming a SPONSOR, committing a PLEDGE, or making a GIFT.

SPONSOR THE WALK
“Walk” Sponsor: $5,000 – be the lead sponsor for the ENTIRE 67 mile walk!
“Day” Sponsor: $1,000 – be a lead sponsor for 1 DAY of the 5-day walk!
“Mile” Sponsor: $250 (approx. 10 cents a step!) – be a lead sponsor for 1 MILE of the 67 miles!
* Note: All sponsors will be recognized with live shout-outs and updates during the walk.

MAKE A PLEDGE
At $3 per Mile: $201
At $2 per Mile: $134
At $1 per Mile: $67

GIFT
Contribute any amount you so wish; no gift is too large nor too small!

Click on the DONATE NOW link. 100% of all contributions will be directed to the “Fighting for Fiona & Friends” fund.

Thank you for your generous support as we fight NKH. So many kids and families are counting on us. Walk with me and let’s fight together!

Love,
Sean Nohelty

Fundraiser Updates

Posted on September 2, 2017

UpdateImage

Posted on September 2, 2017

“Walking For Fiona & Friends” concludes today, but HOPE and the fight against NKH continues on….

For Fiona, Owen, Easton, Rylee, Kaymaen, Hunter, Olivia, Nora, Eric, Joycelyn, Thomas, Kai, Ellie, Kate, Cathryn, Jaime, Destiny, Aimee, Zander, Raegan, Ryan, Jonathan, Tyson, Eden, Taih, Ashton, Jackson, Sammy, and so many others …

SONG OF HOPE by the Josties:
https://www.youtube.com/watch?v=pLituhOTals


Posted on September 2, 2017

UpdateImage

Posted on September 2, 2017

With a MIND enlightened, SPIRIT enlivened, and HEART filled with joy and appreciation, I am overcome with emotion reflecting on the Notre Dame Trail and the conclusion of the “Walking For Fiona & Friends” campaign.

Facts & Figures:
30+ sponsors
110+ supporters who ‘Walked-At-Home’ totaling 1,967.31 Miles, per Aaron Reeder’s Challenge
200+ individual donations
$30,000+ raised for NKH research at the Boler-Parseghian Center for Rare & Neglected Diseases
COUNTLESS lives impacted by your generosity, prayers, love and hope

THANK YOU! Together we are making a difference.
Please watch this video: https://youtu.be/ShEwcOnzKAw


Posted on September 1, 2017

UpdateImage

Posted on September 1, 2017

LAST CALL for submitting any miles you walked at home during Aug 22-26 as part of Aaron's Walking-At-Home Challenge Pledge. If you haven't already submitted your mileage app reports to [email protected], please do so by midnight tonight (September 1) in order for them to be counted. The grand total final tally will be reported tomorrow. Thank you! 

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