The One in a Million Benefit: Helping give others with chordoma a future

Chordoma caregiver and fundraiser Noreen Potempa gave an inspiring talk at our Chordoma Community Conference at Northwestern Medicine in Chicago in June 2019. She spoke about her husband Mick’s journey with chordoma and how it led to their desire to pay it forward to give others with chordoma a future. We’re so grateful for their support.

Watch Noreen’s powerful presentation and read the full transcript of her remarks below:

Six years ago today my husband Mick had surgery and I heard the word chordoma for the first time. My world stopped. I couldn’t breathe. I was paralyzed with fear. Six years later, Mick and I are living a beautiful life together. What made my world spin again and enabled me to move past the fear and find joy in life again? The answer – Josh Sommer and the Chordoma Foundation. I would like to share our journey with you in the hope that together we cannot just dream of a cure but make it happen.

You might be wondering how we even found Josh and the Chordoma Foundation. This was 2013 and the Chordoma Foundation was still in its early stages. I really did not know where to turn to talk to people who knew about what Mick was facing. Early on my son-in-law sent me a link to a Chordoma Survivor Group on Facebook. It was a private group where chordoma patients and their families share support and information. I was inspired by the different stories of chordoma warriors, which gave me the strength to move forward … one step at a time. As a teacher, I always feel the need to educate myself first. My research led me to the Chordoma Foundation, which provided me with information on protocols, chordoma specialists and treatments for Mick – enabling me to move from fear to action.

Mick had two subsequent surgeries and when his neurosurgeon told me that we would have decades together, he gave Mick the greatest gift – his future. How do you thank someone for giving you hope – a chance to see a new grandson born four weeks after his surgeries? I knew in Mick’s hospital room that we had to work to give others hope who are facing the challenges chordoma presents – give others their future. We especially wanted to fight for the children who were diagnosed with chordoma. I had read stories of the children battling this disease and thought of my own grandchildren. I knew we needed to pay this forward to help affected children. As the sun shone through the window of Mick’s hospital room, we were both changed as we reflected on the meaning of our lives, our love, our family, and now our future.

To start we began planning our first One in a Million Benefit both to raise awareness for the disease and whatever money we could. I had never planned a fundraiser. I am here to tell everyone here today – if we can do it – you can do it! If you have planned a birthday party, a wedding or a family gathering you can plan a fundraiser. We all have family and friends that love us and want to help, especially those touched by Mick’s perseverance. We reached out to all of our friends and family, shared Mick’s story and the work of the Chordoma Foundation. We were overwhelmed with all the support and willingness from so many people. They learned of Mick’s journey with this disease and our determination to raise awareness and money to help find a cure. It was the power of Mick’s personal story – his strength and courage that connected people to our event and us. We were never alone as everyone at the Chordoma Foundation was there to encourage us, help with facilitating online resources, and being our strongest cheerleaders.

The night of our first fundraiser was an extraordinary event for us. As I looked around the room and saw 50-60 people who were there for Mick, it filled me with strength, love, and a commitment to continue our work. All of our guests expressed how impressed they were with Josh and the work of the Chordoma Foundation. They understood our passion and wanted to join our team. Our team of two was growing and getting stronger by the minute!

We have had three fundraisers and were planning a fourth in 2018 when we had an unexpected detour. Mick had progressed to annual MRIs when his neurosurgeon noticed a small change. Our hearts stopped but armed with all the knowledge we had learned over the years, we took a deep breath and jumped back into battle mode. My first call was to Shannon our wonderful Director of Patient Services. Shannon provided me with the protocols and best practices for recurrent chordomas and questions to ask our neurosurgeon. Five years later, I was definitely not alone – Josh and Shannon walked me through the current research and empowered me to discuss Mick’s upcoming surgery with his surgeon, making sure that important steps were taken to ensure tissue samples would be saved for the future. One of the hardest parts of this journey was the feeling of helplessness, but five years later I was not alone, I knew what had to be done and I felt the support of Josh and Shannon holding me up during those difficult days. Mick’s surgery was successful and we are planning our 4th One in a Million Benefit on September 15th.

Although I cannot say that I am grateful for what we have been through, I can say that I am grateful for how this experience has changed me. It helped me discover a new purpose. I retired from teaching five years ago and wondered what road I would travel. As I reflect on these past six years what I know is that I have discovered significant meaning in my life. During the most challenging time of my life, the virtue of my life became as clear as ever. Mick and I will be celebrating 46 years together in a few weeks and the days we spend together with our family and six precious grandchildren are treasured moments.

It has been our joy to raise money for research to help the Chordoma Foundation find better treatments and ultimately a cure. We started out small and work to continue to grow our event. To date, we have raised $140,000 and are determined to make our upcoming event another success. Some of the guests here today have become part of our team attending our events and we hold them close to our heart.

At the conclusion of each of our One in a Million Benefit events, my spirit is filled with gratitude to all those who walk this journey with us. This chordoma journey has made Mick and I better people, who are committed to helping others who are battling this horrible disease and supporting Josh and the Chordoma Foundation by helping them extend their reach. We invite you to join us – build your team and know that we will walk with you – one step at a time – to help find a cure. In the words of Margaret Mead:

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”

You are all unique, one in a million, and together we will find a cure and give the gift of a future to all those courageous people diagnosed with chordoma.