Fiona & Friends' Walk for NKH
Donation protected
On Saturday, September 7, 2019 in South Bend, IN the Fitzpatrick & Nohelty families are launching the inaugural Fiona & Friends' Walk for NKH to commemorate the 5 year anniversary of the founding of the "Fighting for Fiona & Friends" fund for rare disease research.
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.
The research effort at BP-CRND was initially launched by Pat & Lynda Sarb in 2015 (whose grandson Owen is living with NKH) and has been supported through the years by Fighting for Fiona & Friends, ND-NKH, the Nora Jane Almany Foundation, NKH Crusaders and many other organizations and individuals all working together in the common fight against NKH. Significant progress has been made in a very short period of time, yet there remains much work to be done.
Please join our families (either in person or virtually) along with the Sarb, Almany, Archibald and other NKH families, Dr. Kasturi Haldar and the NKH research team, the entire BP-CRND student body, and countless other supporters in South Bend and communities across the globe as we all Walk for NKH!
The Walk for NKH covers approximately 3 miles on the Notre Dame campus.
Want to walk with us? Sign up here . The event begins at 9am and includes a post walk mass and lunch concluding by 2pm.
Show your support - make a contribution today! Donations of all sizes are welcome and no donation is too small. We are hopeful to have over 100+ people participate and to collectively raise $10,000 for NKH research. Please help us reach our goal!
All monies raised by this campaign will be 100% directed to NKH research via the Fighting for Fiona & Friends fund. All credit card processing and administrative fees are being fully covered by a generous benefactor.
Please join us in the fight against NKH! Donate today!
We are grateful for your generosity and support!
The Fitzpatrick & Nohelty families
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.
The research effort at BP-CRND was initially launched by Pat & Lynda Sarb in 2015 (whose grandson Owen is living with NKH) and has been supported through the years by Fighting for Fiona & Friends, ND-NKH, the Nora Jane Almany Foundation, NKH Crusaders and many other organizations and individuals all working together in the common fight against NKH. Significant progress has been made in a very short period of time, yet there remains much work to be done.
Please join our families (either in person or virtually) along with the Sarb, Almany, Archibald and other NKH families, Dr. Kasturi Haldar and the NKH research team, the entire BP-CRND student body, and countless other supporters in South Bend and communities across the globe as we all Walk for NKH!
The Walk for NKH covers approximately 3 miles on the Notre Dame campus.
Want to walk with us? Sign up here . The event begins at 9am and includes a post walk mass and lunch concluding by 2pm.
Show your support - make a contribution today! Donations of all sizes are welcome and no donation is too small. We are hopeful to have over 100+ people participate and to collectively raise $10,000 for NKH research. Please help us reach our goal!
All monies raised by this campaign will be 100% directed to NKH research via the Fighting for Fiona & Friends fund. All credit card processing and administrative fees are being fully covered by a generous benefactor.
Please join us in the fight against NKH! Donate today!
We are grateful for your generosity and support!
The Fitzpatrick & Nohelty families
Organizer
Sean Patrick Nohelty
Organizer
South Bend, IN
