Jeff Reynolds '08 and his little "Champ"
Source/Author: Kate Merritt, Director of Annual Giving and Alumni Programs
April 07, 2016
Jeff Reynolds graduated from Shorecrest in 2008 and matriculated to Harvard University where he played on the school's baseball team. After graduating, Jeff went on to play for the Mets organization. During the Mets' off-seasons, Jeff and his wife Elizabeth lived in Tulsa, Oklahoma, where Elizabeth was a Teach For America corps member. She taught pre-kindergarten and it engendered a passion for early childhood development. She enrolled in a PhD program at University of North Carolina, Chapel Hill in 2014, and Jeff took a position at Duke University managing the school's financial portfolio. "Those who know me well probably saw it coming," says Jeff, "but life in a cubicle didn't suit me!" Now, Jeff is working as a flight instructor as he builds flight hours toward a career with the airlines.
A year after the young couple moved to North Carolina, they welcomed their first child - a baby boy named William. Shortly after his birth, Jeff and Elizabeth learned that William was born with Pearson Syndrome, a rare mitochondrial disease. While some young couples might be intimidated by such a diagnosis, Jeff and Elizabeth resolved to face Williams's disease head-on and have established The Champ Foundation, a 501(c)3 non-profit dedicated to funding medical research of Pearson Syndrome.
We recently sat down with Jeff to find out a little more about William and The Champ Foundation.
Shorecrest: It has been quite a year for your little family! Tell us a little about William's birth, diagnosis and how The Champ Foundation was started.
Jeff: William was born on June 22, 2015. He looked perfect to me, but the doctors noticed that he was quite pale and breathing rapidly. He went to the nursery for observation and to the neonatal intensive care unit (NICU) shortly thereafter. From birth, William has had transfusion dependent anemia. In his first week, he had five transfusions (it might have been six, we didn't sleep much.) He endured it all with a smile and we started calling him "Champ" right away.
William's medical team at Duke started working through the possible causes of neonatal anemia. Unfortunately, we emerged with a diagnosis of Pearson Syndrome (PS). PS is a very rare mitochondrial disease cause by a deletion in William's mitochondrial DNA. Since it was first described in 1979, there have only been around 100 cases described in the medical literature. Given its extreme rarity, we feel fortunate that William's hematologist was able to recognize and accurately diagnose his ailment.
Shorecrest; How is William doing today?
Jeff: William still needs transfusions every 4 weeks. He is also neutropenic, which means that infections are a constant concern. Otherwise, William is doing very well. We know that a number of William's systems could be affected by PS. His pancreas, eyes, ears, kidneys, muscles, nerves and brain could all be compromised. Because it is so rare, no one can tell us what will go wrong or when. Elizabeth and I enjoy every moment of William's relative good health today. If you hung out with him, you would never suspect that William had such a serious illness. You would have a lot of fun though!
Shorecrest; After learning of William's condition, it didn't take you long to set up The Champ Foundation! What inspired you take action and start the non-profit?
Jeff: Our goal is the same as any parent's. We want William to be happy and healthy. The Champ Foundation and the research it supports provide William the chance to lead a fulfilling life.
Shorecrest: You're attacking fundraising for The Champ Foundation from a number of different angles - tell us a little about the various fundraisers going on around the country.
Jeff: We have so many people in our corner and we've been humbled by the support. Every fundraiser is helping us reach our goal, and no effort is too small. A sorority nacho night, a poker tournament, and a cycling event have all raised awareness and donations for the foundation. Over the next few months, we have huge benefits planned in Buffalo, New York, and Virginia Beach, Virginia, with auctions, raffles and live music. The Brooklyn Cyclones, a baseball team I played with in 2012, is holding a Champ Foundation night July 22.
Jeff: We have so many people in our corner and we've been humbled by the support. Every fundraiser is helping us reach our goal, and no effort is too small. A sorority nacho night, a poker tournament, and a cycling event have all raised awareness and donations for the foundation. Over the next few months, we have huge benefits planned in Buffalo, New York, and Virginia Beach, Virginia, with auctions, raffles and live music. The Brooklyn Cyclones, a baseball team I played with in 2012, is holding a Champ Foundation night July 22.
Shorecrest: What exactly is the foundation funding?
Jeff: So far, The Champ Foundation has approved a $100,000 grant to Dr. Suneet Agarwal at Boston Children's Hospital. You can read the lay person's abstract for the project at http://www.
Every penny The Champ Foundation receives go to research. We pay for things like laboratory supplies, equipment and researchers' salaries. We do not pay any indirect costs of research institutions.
Shorecrest: What can folks do to help?
Jeff: If you'd like to help through a donation, you can mail a check (without transaction fees) to:
Jeff: If you'd like to help through a donation, you can mail a check (without transaction fees) to:
The Champ Foundation
2712 Little Rogers Road
Durham, NC
Or, you can donate through our website with PayPal at http://www.
Also, please consider using Amazon Smile with The Champ Foundation as your designated charity. You can also start your own campaign through Crowdrise.
To learn more about William and The Champ Foundation, check out this great video:.
Visit their website at www.thechampfoundation.org.
