On October 9, 2022, the 2022 Bank of America Chicago Marathon took place, with Tim Coughlin and his best friend Chris Schastok, running to raise funds for the NR2F1 Foundation. Tim’s youngest daughter Edith had been recently diagnosed with BBSOAS so Tim and Chris were motivated to help fund continuing research.
Marathon donation results
With no idea of how many donations to expect, they have so far raised over $130K for the foundation!! AND there are donations still coming in, as well as a matching gift from CBRE, estimated to be $5k or more!
The money will fund research that will yield life-changing returns for all those affected by NR2F1 variants by expanding current projects, as well as other potential projects that have up until now not been financially viable to undertake.
Tim and his wife Jennifer, Edith’s parents, recently voiced their thoughts on the marathon and Edith’s recent diagnosis and how both have affected their lives.
With any loved one, receipt of a challenging diagnosis will bring a whirlwind of emotions. In my experience with our daughter, Edith, these were feelings of fear, alienation and loneliness.
As I began to process, the myriad of concerns and questions compounded continuously – what does this mean for Edith? What does the mean for our family? How must we (and can we) adjust our lives to make this all ok? The last question was perhaps the most frustrating – with so little known about such a wide ranging/varying condition, there is no ‘playbook’ to read from, no panacea at the ready to put our world back together again.
The love, acceptance and validation provided by the NR2F1 Foundation and broader BBSOAS community was simply amazing for us – and for me personally was a lifeline. Here I found a knowledgeable, generous, committed group who has lived, and is living, the same reality as me and my family.
I am blessed to have Chris, not only Edith’s godfather, but as my friend. Whether or not he knew it at the time, his reaching out to the NR2F1 foundation and suggesting the marathon fundraiser did many things, but three strike me in particular:
First, it was a profound demonstration of his love for me and our family. This undertaking was a commitment of his time, attention (away from his own family and priorities), and a serious physical undertaking.
Second, it gave me something I could DO, focus on, to make forward progress. Each instance of research, outreach and advocacy moves us closer to a better understanding of BBSOAS, which will help my daughter and the wider BBSOAS community.
Third, and most powerfully for me, it gave me the means to share the news of our family’s situation in a constructive and positive manner. Upon diagnosis, my instinctual reaction (rightly or wrongly) was to close up, protect her and our family from the judgement, concern, pity, fear, ignorance, etc., which in my still processing and terrified mind the world had waiting for us. In actuality, I was simply frozen with fear.
Taking from the second point above, the marathon and fundraising was something I could DO – and in choosing to do so we have been greeted by love, joy, kindness, acceptance and understanding. This positive feedback loop has been a profound gift.
We all have our own ways of processing our circumstances – for me, the entire process of finding the foundation, committing to the cause, soliciting funds and telling our story has been a lifeline. This marathon journey has served as both the catalyst and means to understand and accept my changed role as a dad, husband, son, BBSOAS parent and community member.
Chris contacted the foundation and decided to run the marathon in aid of Edith without telling us. When we found out we honestly didn’t know what to say. Tim and Chris have been great friends for a long time, but this act of kindness and love was amazing to us.
We were still so early in our journey of being diagnosed and dealing with the emotions of how to process the diagnosis. Tim and I agree, without Chris deciding to run the marathon we wouldn’t have had the courage to share our story, or ask for support from our friends and colleagues. Chris really provided us with the gift of facing our challenges head on, and being honest with the world what we were going through.
As Edith’s Mum, and Tim’s wife, I couldn’t have felt more pride. Tim is and has been an incredible Dad throughout this past 18-month journey with Edith, and the knowledge that he knows no bounds in his dedication in helping Edith and all BBSOAS patients, I can’t find words to express my gratitude.
Since starting the fundraising and watching the numbers tick up beyond what we would have imagined, this spurred us on to enquire about joining the board. We are now both board members (I’m honorary). As individuals, Tim and I are both action-orientated, so we really are taking the approach of throwing ourselves at this, it’s our way of dealing with things and feeling as though we are doing enough to help our darling Edith.
Carlie Monnier, President of the NR2F1 Foundation Board of Directors, attended the marathon in Chicago. “From the very first conversations I had with Chris and Tim to now; I am completely blown away by the success of this fundraiser, humbled by their dedication, and inspired by their friendship. Tim is lucky to have such a supportive friend by his side during probably one of the toughest periods in his life to date.
It was exhilarating to be able to be there, jogging from point to point to cheer them on. They ran the entire 26.2 miles, side by side supporting each other to the finish line. One should never underestimate the power of family members, friends and colleagues like all those who invested in the NR2F1 Foundation during this fundraiser. Thanks to their support, we can continue to expand upon current research projects underway as well as explore other avenues that were not otherwise financially viable.
Their investments will yield a different but more powerful kind of return; a better life and hope on the horizon for children like Edith and her international BBSOAS family.
The NR2F1 Foundation Board is sincerely grateful. Thank you!”
Carlie is the President of the Board of Directors for the NR2F1 Foundation, a registered 501(c)(3) non-profit organization dedicated to those living with rare mutations on the Nr2f1 gene.
With a B.S. in Special Education and a M.S. in Counseling, Carlie has worked at EPU Children’s Center as a Resource Specialist serving parents of children living with disabilities and then directed a parent leadership group for disability advocacy through storytelling and public speaking.
Carlie lives with her husband Jeff and their two daughters, one of whom has the rare Nr2f1 gene mutation, in Royal Oak, Michigan. She wants all Nr2f1 families whose lives have changed dramatically to know they are not alone.