A Life Well Lived with a Legacy of Hope

02.13.18

John Gallagher loved baseball! A die-hard Minnesota Twins fan, his happiest days were spent at the ballpark. He kept his beloved Twins baseball statistics
in an excel spreadsheet, and he considered himself twice blessed when they won the World Series, not once, but twice!

John was also very accomplished. He advocated for those with disabilities, attending caucuses and meeting with senators and legislators at the Minnesota
State Capital. He did so, because he was affected with a rare genetic disorder himself, Snyder-Robinson syndrome. John’s family was the first to be identified with this ultra-rare disorder in 1969, when John was just 10 years old. To date, only 50 individuals worldwide
have been diagnosed with Snyder-Robinson syndrome (SRS).

John knew that he was different. He would say “I learn stuff just like everyone else, it just takes me a little longer.” How true that was! John was well
informed on current events and was very aware of political issues. He knew right from wrong and had very strong, well-formed opinions. He could articulate
very plainly what he believed and why he believed it, and his ability to do that was quite a blessing.

John was true, honest, and always had the best of intentions. A quiet fellow—He didn’t crave the spotlight. He didn’t need to be the center of attention.
He was content just to be part of the group.

John earned his GED and was his own guardian. He held several jobs, but his 15 years working for the Veteran’s Administration was definitely his favorite.
This experience gave him a great sense of patriotism, and he saw it as a duty to honor and support our veterans. After earning a medical retirement,
he continued to volunteer at the VA at least once a week.

John passed away on October 28, 2017 at the age of 58.

Just two months after his death, a small group of scientists, researchers, doctors, and parents convened at the Greenwood Genetic Center in Greenwood,
SC for a workshop to discuss advancing work into the treatment of this ultra-rare disorder. They call themselves the ‘Polyamigos’ – a group of friends
dedicated to collaboration to better understand and treat this disorder involving polyamine compounds.

At the workshop John Gallagher’s life was honored, and it was shared that his final wish was to donate his organs to research to help others including
his affected brothers and nephews. Researchers plan to examine the donated organs through a lab at Michigan State to better understand how spermine,
the polyamine compound which is deficient in patients with SRS, affects each tissue.

“John was loved as a brother, son, uncle, nephew, cousin, friend, and workmate. He lived his life full of faith, hope, and charity to all,” said his brother,
Daniel Gallagher. “His life touched all those who knew him, and now, with this gift, he will continue to touch lives for generations to come.”

Katia Luedtke, the mother of Connor Raymond, a 10 year old boy with SRS, echoed those sentiments, “Words seem insufficient to adequately capture the magnitude
of the gift John gave to SRS research. His legacy is a great one and we will do our best to honor his memory with our efforts to find a cure or treatment
for SRS.”

John Francis Gallagher

March 3rd, 1959 – October 28th, 2017

“John’s life touched all those who knew him in a very special way. John lived his life in hope and charity and the world is a better place because of him.”

Donations in memory of John may be made at http://snyder-robinson.org/news/ or by sending a check to The
Snyder-Robinson Foundation , 1443 Layman Street, McLean, VA 22101. Your donations provide support to affected families and to continue SRS research.

By: Lori Bassett

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