Fiona & Friends NKH Remembrance 2020
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Fighting for Fiona & Friends 2nd Annual Walk for NKH could not happen this year due to Covid-19 pandemic social restrictions. We miss the opportunity to gather in compassion and camaraderie, walking to raise awareness and funds for NKH research. While Fiona has been an angel for over 10 years, our family continues to fight for her and all of her NKH friends. Now more than ever we need to strengthen our fight against the rare disease that took her and so many others from us too early.
Based at the Boler-Parseghian Center for Rare & Neglected Diseases (BP CRND ) at the University of Notre Dame, the Fighting for Fiona & Friends fund supports critically important research on Non-Ketotic Hyperglycinemia (NKH), an extremely rare genetic disease that afflicted our daughter / granddaughter / niece / cousin, Fiona Fitzpatrick, and approximately 1 in 60,000 kids across the globe. Dr. Kasturi Haldar and her amazing team are one of a very small handful of researchers studying NKH in the hopes of better understanding the disease and developing therapies to improve the quality of life and eventually a cure.
In the last couple years due to the increased awareness and fundraising events like ours (and those of the Sarb, Almany, Archibald, and so many other NKH families) Dr. Haldar and her small, yet mighty, team have made great progress in studying the disease and working towards several therapies, including new strides in gene therapy.
Join us in our November NKH Remembrance Campaign, kicking off Monday, November 2 (NKH Remembrance Day) and running through Thanksgiving -- the anniversary of our families’ founding of the Fighting for Fiona & Friends fund in 2015.
Donate today to honor Fiona or another NKH angel or child and help us reach our goal of $5,000.
No donation is too small. Every dollar of every donation makes a difference and 100% goes directly to NKH research at Notre Dame.
All GoFundMe fees subtracted from your donation will be replenished by an generous, anonymous donor (we are grateful!).
We look forward to the time when we can gather together again.
Until then, we are thankful for your continued love & support as we FIGHT NKH!
Our angel, Fiona.
Based at the Boler-Parseghian Center for Rare & Neglected Diseases (BP CRND ) at the University of Notre Dame, the Fighting for Fiona & Friends fund supports critically important research on Non-Ketotic Hyperglycinemia (NKH), an extremely rare genetic disease that afflicted our daughter / granddaughter / niece / cousin, Fiona Fitzpatrick, and approximately 1 in 60,000 kids across the globe. Dr. Kasturi Haldar and her amazing team are one of a very small handful of researchers studying NKH in the hopes of better understanding the disease and developing therapies to improve the quality of life and eventually a cure.
In the last couple years due to the increased awareness and fundraising events like ours (and those of the Sarb, Almany, Archibald, and so many other NKH families) Dr. Haldar and her small, yet mighty, team have made great progress in studying the disease and working towards several therapies, including new strides in gene therapy.
Join us in our November NKH Remembrance Campaign, kicking off Monday, November 2 (NKH Remembrance Day) and running through Thanksgiving -- the anniversary of our families’ founding of the Fighting for Fiona & Friends fund in 2015.
Donate today to honor Fiona or another NKH angel or child and help us reach our goal of $5,000.
No donation is too small. Every dollar of every donation makes a difference and 100% goes directly to NKH research at Notre Dame.
All GoFundMe fees subtracted from your donation will be replenished by an generous, anonymous donor (we are grateful!).
We look forward to the time when we can gather together again.
Until then, we are thankful for your continued love & support as we FIGHT NKH!
Our angel, Fiona.Organizer
Sean Patrick Nohelty
Organizer
South Bend, IN
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