A Family’s Promise Leads to Life-Saving Research Program

Posted February 2nd, 2015 by Be The Match and filed in News, Patient Stories
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The Amy Research Program began in 1998 with a family’s promise to Amy – a mother, a wife, a daughter. Since then, it has evolved into a partnership that has supported 25 scholars and 13 post-doctoral fellows in their research on improving transplant outcomes. The goal of their research is to discover ways to treat and prevent the potentially life-threatening complications some patients face after transplant.

Photo of Amy Strelzer ManasevitAmy’s story

Amy Strelzer Manasevit was a vibrant young mother who was diagnosed with multiple myeloma in 1993. A marrow transplant was her only hope for a cure. The search for a matching unrelated donor was long and complicated, but Amy and her family never gave up hope. Finally, a suitable donor was found, and Amy received her transplant. Unfortunately, even though the procedure was successful, it severely depleted her immune system and left her vulnerable to infection. Amy developed pneumonia and passed away six weeks after returning home.

Prior to her death, Amy turned to her father, Marty, and asked him to help others avoid her difficult struggle. He promised. In 1997, Marty, Amy’s husband Bruce, and their friends collaborated with us to establish the Amy Strelzer Manasevit Research Program for the Study of Post-Transplant Complications.

The Amy Research Program

The Amy Strelzer Manasevit Research Program bestows one of the largest and most coveted research grants in the field of marrow and cord blood transplantation. The program develops the next generation of physician-scientists by supporting and encouraging the discovery of new ways to treat and prevent post-transplant complications.

This crucial funding, distributed over three years, enables the young investigators to establish themselves as researchers and successfully compete for future grant opportunities. To date, through the Amy Research Program, Be The Match Foundation has supported 25 scholars. As a group, the Amy Scholars have been awarded $6.5 million and have leveraged their research funding to secure an additional $42 million.

What began as a promise has evolved into a program benefiting patients across the globe. Launched by family, supported by philanthropy, and furthered by research talent, the program is an exemplary model for people coming together to make a difference for patients in need.

2015 Scholar Announced

This February, two additional scholars will be awarded research scholarships:

  • Frank M. Cichocki, Ph.D., University of Minnesota
  • Joseph A. Pidala, M.D., Ph.D., H. Lee Moffitt Cancer Center and Research Institute

 

16 Responses to “A Family’s Promise Leads to Life-Saving Research Program”

  1. Kathy Fredrickson says:

    My brother, Steven Levsen, was diagnosed with CML in 1988 and had a bone marrow transplant in September 1988. I am glad to report that he is doing very well.

    Dr. Dennis Confer was his doctor at the University of MN. It is good to see that he is involved in such important research. I am grateful that he was Steve’s doctor. Steve always speaks well of him.

  2. Linda Voight says:

    My Daughter Danica,
    Had Aplastic Anemia in 2006 and had to have a BMT in 2007!! It went great.. with no comlications… She is off all anti rejection medications and is doing great!! I have no doubt that this fathers effort in part is what made Danica’s BMT go so well!!

  3. Deborah Rozniewski says:

    I am a healthy and registered donor. Reading a father’s promise this afternoon gives me reassurance that my decision to be a donor is the most valulable gift I can give to anyone.

  4. Yvonne Formel says:

    My brother John was diagnosed with myeloma dysplasia in 2006. He received a bone marrow transplant in June of 2007 and passed away November of 2007 from septic shock. Unbeknown to him he had developed an infection and was self medicating at home thinking he had the flu. Since his death a day does not go by when I don’t think, “what if…….”. I am genuinely grateful for Amy’s parents stepping up and creating a scholarship program in her honor. What better way than to say, all was not lost.

  5. Denise Narciso says:

    I am a blessed healthy registered donor. Reading that promise to his daughter heartbreaking and heart-warming at the same time. I can’t image having to make such a promise. Please ask your friends and family to promise to register to donate so no one has to again.

  6. Sophia Betancourt says:

    My 15 yr old daughter was diagnosed with AML (acute myeloid leukemia) in October of 2006. A bone marrow transplant was our only option. She received her transplant from an anonymous donor in January 2007. After a few months of doing really well, we received the bad news she was in relapse. Her doctors were able to generate gvhd and the donor cells were able to take over and bring her to near remission again. Giving us special time with her. At the end of 2007 she developed a respiratory infection that over took her. She passed away exactly 3 years ago today……thank you to everyone who work tirelessly in care of our loved ones and research that gives us hope.

  7. Carol Cahill says:

    I had the honor of being called twice to donate bone marrow. The first time I matched it was with a husband and father of two. The transplant was successful but he eventually lost his battle with CML. I am still in contact with his wife and two children, 15 years later. They are grown now and it has been a pleasure to be part of their lives. The second time I matched they found another donor that was better and I wasn’t needed. But, I would do it again a thousand times if I could

  8. Robyn Nakamura says:

    On Sept 30th, 2006,my middle son Curt (then 19) was diagnosed with AML leukemia. After going through several rounds of intense chemo, he had a bone marrow transplant on Feb. 9, 1997. We were so blessed his older brother Chase was a perfect match! Curt’s BMT was so successful, he was so blessed he did not have ANY graft versus host disease at all, absolutely no complications at all! We are so thankful to the wonderful care he received by his team of doctors and nurses at Kapiolani Women’s & Children’s Medical Center in Hawaii! We just celebrated his 5th year “rebirth”!!!

    • Phillip Yoon says:

      Thank you for sharing Curt’s 5th yr. I’m glad to hear such good news. May your cup over flow with the time you have with your beloved son. Many times family and friends think our loved ones are out of the woods because they found a “match” (or one that may work) but that isn’t reality. There are sooo many issues thereafter. I’m glad this website is posting many of the realities of the issues after the bone marrow transplant. Thank you for sharing. Phil

  9. Lillian San Agustin-Davis says:

    My husband was diagnose with AML on December 2009. There was only one potential donor on the registry. The donor requested for a 3 week delay back in July 2010. The day before my husband was to be admitted to start the process of the transplant in August 2010, I received a call from City of Hope that the donor was “made temporarily unavailable.” This news crushed our hearts and was very devastated. My husband relapsed and just underwent another round of chemo which hit him pretty bad this time around. It is now February 2011 and my husband is now in remission. COH has contacted us and just confirmed that the same donor has come back on his own to say he is ready. I believe everything happens for a reason and I thank God and pray that He protects the donor and throughout the process of the transplant that everything will go well.

  10. Jerry says:

    Your case touches our hearts in a special way. I don’t know why. Reading what your experience was describes the pain, frustration, and eventual futility a family feels watching their loved one slowly evaporate away. I can only imagine what the view was like from your daughter’s point. You say, “giving us special time,” is so true. There is nothing better here on earth than knowing Jesus, and having a day, hour, even a moment of special closeness with the one you love.

    God Bless you, and everybody else who in some way fights these diseases.

  11. cathy mason says:

    My niece, Kate has fought her ALL and found a 100% match from an ‘angel’ in Germany, who had the very same mutant gene she had which made her case so difficult and dangerous. Her transplant has gone very well, ahead of schedule, actually in way of recovery. Her side effects have been horrid, but she has shown such bravery and courage that she has made ALL of us feel so humble, witnessing her fight for her life. She is a wife and Mother to three kids, under the age of six. She was diagnosed on her 32 Bday in Sept. I felt so helpless that the only thing I could think of was to offer to shave my 58 yr. old head in solidarity! She cried when I told her. We had many laughs over what I would look like! Her husband shaved my head and it was wonderful to see her smile!!! Her kids didn’t even comment the next morning when they saw me, just shows what is important. Children see the eyes, the smile of people they love,,,,not hair!!!! I was the only one who offered and did it for her….it was more for me it turns out!

    • Phillip Yoon says:

      Good work Cathy! You jerked a solid stream out of me. They just want to see who’s in it with them, at least the best as we can. This really puts vanity in good perspective. Love the way you look after your loved ones. Phil

  12. Kent says:

    My wife was diagnosed with Chronic Lymphocytic Leukemia in May 2006 (with 17P Deletion). She had a stem cell transplant on 01 Nov 2010 at the Mayo Clinic from a 37 yr old donor from Europe. She has done very well so far. She is Day +110 now and is having some GVHD but so far it is manageable. God Bless all researchers and those that donate to research.

  13. jennifer m greb says:

    Thank you!!

  14. Jacki Lansdowner says:

    Nicely written as there is so much depth covered on this topic. One thing that I’ve learned over the years is that if you don’t know who and what you are dealing with, basically it means you are not getting anywhere. Not only on competitors but the size of market, what everyone is interested about, every small little detail needs to be analyzed and studied.

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