ND Trail 2017
The ND Trail pilgrimage (Aug. 13-26, 2017) commemorated the 175th anniversary of Notre Dame’s founding by Holy Cross Priest Fr. Edward Sorin. Patrick Sarb (’73) retraced steps of Fr. Sorin, from Vincennes, Indiana to Notre Dame, a distance of over 300 (see map). His wife Lynda Sarb (’73) joined him for the final three days and 40 miles of the ND Trail. Sean Nohelty (‘97) walked the trail for five days and 67 miles. We honor the participation that deepened their ties to Notre Dame and raised awareness to support therapies for Non Ketotic Hyperglycinemia (NKH), a rare metabolic disorder that causes severe neurodevelopmental disease.
Pat and Lynda established the ‘ND-NKH’ fund in honor of their grandson Owen Sarb diagnosed with NKH within months of birth and now, against all odds is age 5.
Sean’s sister and brother-in-law Mary and John Fitzpatrick sadly lost their daughter Fiona to NKH in 2009 when she was three years old. In her memory, they established ‘Fighting for Fiona and Friends’ (FFF).
From August 13th through August 26th I was a mile Notre Dame Trail pilgrimage commemorating the 175th anniversary of Notre Dame’s founding by Holy Cross priest Fr. Edward Sorin. See http://trail.nd.edu. My wife Lynda joined us for the final three days and 40 miles of the ND Trail. In spite of some technical difficulties, we still raised over $9,000 for NKH Research during the pilgrimage. I was interviewed twice by South Be station WNDU (NBC affiliate) and once by South Bend station WSBT (CBS affiliate). My family history and reason for taking part in the pilgrimage were highlighted on the ND Trail blog "Day One".
Participating in the Notre Dame Trail as one of the 32-member "Core Team" of Pilgrims was life changing, leaving me with priceless memories, many new friends, spiritual growth, and even greater love for our Lady's University.
-Pat Sarb ‘73
REFLECTIONS ALONG THE NOTRE DAME TRAIL
It was near the end of the third day of the 5-day Trail, after having walked 15 miles already that day and some 30 plus miles the previous two, where exhaustion met exhilaration (and perhaps a touch of delirium), that I was awoken to an unfamiliar silence. Throughout the entire trail, the air had been full of conversation with newfound friends and fellow pilgrims, sharing with one another our life stories as our paces ebbed and flowed along Fr. Sorin’s historic path thru Central Indiana; however, on this third day, there was a sudden silence. I looked up, forward, backward, all around. Somehow, I had found myself in a vast gap with not a soul within earshot or within sight far afield. It was there in the solitude and quiet when I was reflecting on purpose, passion and faith, that my ears opened to the startling sounds of sun-soaked corn swaying in the slight wind, electric lines overhead bristling with millions of super-charged electrons shooting back and forth like the unspoken prayers of people zooming up to heaven, and the rhythmic bi-pedal thumping of my heavy footsteps across the barren dirt road. Amongst this symphony of sounds previously unheard, and just like the unyielding shadow that traced my every step, I realized that though we may think our life’s journeys may be unique, we truly are never ever walking thru them alone.
I know my sister Mary and her husband John felt alone on their journey too, when their daughter, my niece, Fiona was diagnosed with Non-Ketotic Hyperglycinemia (NKH) in April 2006 just a few days after her birth. Being one of the rarest of rare diseases that affects at most 1 in 60,000 births, there is very little known about NKH; however, thru social media they came in contact with other families similarly facing this disease across the globe, including fellow Trail pilgrims Pat and Lynda Sarb whose grandson Owen has NKH, and ultimately to learn of the wonderful people at the Boler-Parseghian Center for Rare & Neglected Diseases at Notre Dame (BP-CRND). Director Dr. Kasturi Haldar and her amazing team of researchers, advocates and students at BP-CRND have given Mary, John, Pat, Lynda, me and countless others reason to believe in hope again, that our children, nieces, nephews, brothers and sisters need not face and fight NKH, Neiman Pick-Type C, and so many other rare diseases alone anymore.
I set forth on the Notre Dame Trail to honor and trace the footsteps of my alma mater’s founding father, Rev. Edward Sorin C.S.C., and his fellow brothers of the Holy Cross in celebration of the University’s 175th anniversary, as well as to help raise awareness of the Center for Rare & Neglected Diseases. I cannot think of a more befitting testimony to Fr. Sorin’s vision that Notre Dame be ‘a force for good in the world’ than the great work and people of BP-CRND. They are truly making a difference for so many who have previously felt alone, helpless and hopeless. As Notre Dame famously asks of you during their ‘What Would You Fight For?’ series, our answer is we are “Fighting (and Walking!) For Fiona & Friends”.
In addition to the 67 miles I walked with hundreds of other pilgrims on the Notre Dame Trail in August, over 110 people engaged in a matching challenge and walked over 2,000 miles in their own communities around the world. If you would like to walk with us and BP-CRND as we continue together along this journey fighting NKH, please visit: www.youcaring.com/walkingforfiona. Thank you and GO IRISH!
-Sean Patrick Nohelty ‘97