Ed Johnson and Anne Davini-Johnson - Multiple Myeloma Research Foundation

Featured Supporter:
Ed Johnson and Anne Davini-Johnson

MMRF Race for Research:
Twin Cities 5K Walk/Run

Spirit of Hope Honoree

The MMRF is proud to honor Ed Johnson and Anne Davini-Johnson as the 2013 recipients of the Spirit of Hope Award, given at every MMRF Race for Research 5K event to people who inspire hope and show extraordinary commitment to the MMRF. Ed and Anne have touched the myeloma community with their strength of character, their kindness, and their embodiment of hope.

Ed and Anne’s Story:

Posted: September, 2013

The Multiple Myeloma Research Foundation is delighted to recognize Ed Johnson and his wife, Anne Davini-Johnson, as the Spirit of Hope honorees at the 2013 MMRF Race for Research: Twin Cities 5K Walk/Run.

Ed was diagnosed with multiple myeloma in 2007, while Anne was five months pregnant with their second child, Louis. The day after Louis was born, the Johnsons were in the car on the way to Rochester, MN for Ed to have his stem cells harvested. While the family dealt with Ed’s diagnosis, the new addition to their family, and the endless stream of doctors’ visits, treatment recommendations, and information about the disease; friends and family members looked for a way to support Ed and Anne in their fight. Several of these supporters discovered the MMRF Race for Research in Twin Cities, and decided to participate in a show of solidarity for the family.

The Johnsons were unable to attend the 2007 event with their supporters, as Ed was recovering at the Mayo Clinic from his stem cell transplant. However, on race morning, Anne and Ed made a resolution to attend the following year’s event and celebrate Ed’s first “re-birthday” by walking and raising money to support myeloma research.

“We are incredibly grateful to our friends and family, who walked this path and participated at the race, even when we couldn’t,” said Anne.
In 2008, the newly-formed “TEAM TIR(ED)” raised more than $20,000 for the MMRF through donations from family members, friends, and several key local corporate sponsors. TEAM TIR(ED)’s name is not only a play on Ed’s first name; it also derives its significance from the team’s tagline: “Ed is tired of cancer.” The tagline is both humorous and also serious. Cancer is exhausting.

“We cannot dwell only on the serious side of things,” Ed shared. “It was important for us to touch on the humor part of it because we have, throughout this experience, maintained our sense of humor.”

Ed strives to keep living his life as fully as possible. In addition to his incredible work for the MMRF Race for Research program, Ed and his family are also involved in the MMRF Endurance Events program. An avid runner, Ed feared he would never run again after his myeloma diagnosis. The day he returned post-transplant from Mayo in 2007, Ed ran just 5 minutes, very slowly. Now, six years later, he is running for the MMRF in the upcoming ING New York City Marathon.
The Johnsons draw strength from the prospect of a brighter future. “Treatments are getting better, myeloma patients are living longer, and my future is objectively brighter than it was for myeloma patients who came before me,” shared Ed.

Perhaps most important, the solidarity the Johnsons find in their family dynamic gives them both hope and courage – and Ed credits his stamina to Anne’s amazing perseverance and drive to keep her family together: “she has an iron will equal to at least ten people,” he says.

Ed and Anne also express sincere gratitude to the many patients and families in the Twin Cities area who they have met through the MMRF over the last five years. Their family drew much of their strength and hope from this large community of fighters, survivors, and supporters.
“Whether they are crossing the finish line in the front of the pack, making their way in a wheelchair, or with us in spirit alone, we wouldn’t have come this far without them,” stated Anne.

The Johnsons’ Race team includes family and friends from Denver to Annapolis and everywhere in between, as well as colleagues from NRG Minneapolis Energy Center, Thomson Reuters and the Fund for the Public Interest. This year, in keeping with tradition, you can find the many members of TEAM TIR(ED) gathered to support Ed, Anne, and their sons Augie, 8, and Louis, 6, on September 29th. If you have trouble spotting the team in the crowd, look for orange – the team’s signature color. Each member will be sporting an orange bandana on race day!

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