Rep Wagner Invites Local Be The Match Advocate to SOTU Address

ST. LOUIS, MO–– A local Chesterfield mother joined Congresswoman Ann Wagner (R-MO) for the President’s State of the Union Address to a special joint session of Congress in Washington, DC. Kristin Akin of Chesterfield was invited to President Donald Trump’s address by Congresswoman Wagner in recognition of her tireless advocacy to help Americans who require blood stem cell transplants—inspired by the memory of her two sons who tragically lost their battles from Hemophagocytic Lymphohistiocytosis (HRH), a rare immune system disease.

As a long-time advocate for the National Marrow Donor Program (NMDP)/Be The Match, Akin has worked closely with Congresswoman Wagner and other leaders on Capitol Hill to secure funding for life-saving cellular therapy programs that lead to new breakthrough treatments. In addition, Akin and NMDP/Be The Match work to ensure patients’ access to blood stem cell transplants, the only curative therapies for immune diseases like HLH and blood cancers like leukemia and lymphoma.

“I was privileged to hear Kristin’s story as an advocate for the National Marrow Donor Program/Be The Match. Her exceptional advocacy serves as yet another reminder that we have to invest in programs that give doctors and researchers greater opportunities to discover breakthrough treatments that can save the lives of children with these terrible diseases. It was my absolute honor to have her as my guest to the President’s State of the Union Address to Congress. She is an example to us all in her continued advocacy in memory of her sons Matthew and Andrew,” said Congresswoman Wagner.

“Joining Congresswoman Wagner in Washington is a tremendous honor and opportunity to tell the story of my sons’ brave battle with HRH so that leaders across the country will advance policies to help sick patients like Andrew and Matthew,” said Akin. “In memory of my sons, who bravely fought their disease, I will continue to advocate for children and families whose only hope for survival is a donor match made possible by the NMDP/Be The Match. No parent should have to go through what our family has gone through.”

In September 2007, Kristin turned to the Be The Match Registry® to help find a suitable bone marrow donor for their three-month old son, Andrew. After two failed transplants from unrelated donors, Andrew’s doctors tested their older son, Matthew, to see if he would be a suitable donor, but discovered that he too had the rare HLH mutation.

Tragically, Andrew passed away in September 2009 at the age of two. Matthew passed away months later in May 2010 at the age of five. In honor of their memories, Kristin and her husband Justin founded the Matthew And Andrew Akin Foundation, which works to raise funds for education, awareness and support for families with children diagnosed with HLH.

“Each time I advocate for families like mine, it conjures up a lot of emotion,” Akin added. “People ask me, ‘Why do you want to do this?’ I tell them NMDP/Be The Match gave us hope. I am eternally grateful to NMDP/Be The Match for trying to save my children’s lives.”

Since its inception, the NMDP/Be The Match has facilitated more than 92,000 bone marrow transplants, bringing together a patient in need of life-saving therapy with a complete stranger motivated only by the desire to provide the cure for that patient’s disease.

NMDP/Be The Match has grown its registry to more than 20 million donors and 295,000 cord blood units. Through international relationships, patients have access to more than 33 million potential donors and 765,000 cord blood units worldwide.

By fully funding these programs, Congress can help to advance new and innovative methods of providing the best possible transplant to every patient in need, regardless of socioeconomic status, age, ethnic ancestry, or any other individually defining characteristic.

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About Be The Match®

For people with life-threatening blood cancers—like leukemia and lymphoma—or other diseases, a cure exists. Be The Match connects patients with their donor match for a life-saving marrow or umbilical cord blood transplant. People can contribute to the cure as a member of the Be The Match Registry®, financial contributor or volunteer. Be The Match provides patients and their families one-on-one support, education, and guidance before, during and after transplant.

Be The Match is operated by the National Marrow Donor Program® (NMDP), a nonprofit organization that matches patients with donors, educates health care professionals and conducts research through its research program, CIBMTR® (Center for International Blood and Marrow Transplant Research®), so more lives can be saved. To learn more about the cure, visit BeTheMatch.org or call 1 (800) MARROW-2.

Media Contact: Blair Foy 612-400-3410