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Why I Support AA&MDSIF

We invite you to read these patient and family testimonies about why they give to AA&MDSIF. Each story is unique and the words inspiring. The common thread in each of these messages is giving to help people who face incredible odds against aplastic anemia, MDS, and PNH. Please consider joining these patients and families by making your gift today. Please bookmark this page and make it one of your favorites for updates and new messages of answers, support, and hope..

Originally published on 11/26/2012 - 1:28pm. Last updated on Mon, 12/03/2012 - 12:27pm.
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Debbie Kemp, MDS Patient

"'You have Myelodysplastic Syndrome' was the diagnosis my Hematologist/Oncologist gave me on that day 5 years ago as my husband and I sat across from him at his desk. "I have Myelo-what?" was my bewildered reply having never heard of this strange sounding disease and because the only symptom I was experiencing was ongoing fatigue. Well, that was the beginning of my MDS journey which would include numerous red blood cell transfusions, an unsuccessful course of Revlimid and increasing complex chromosome abnormalities that would lead me down the path toward my best chance at survival, an unrelated bone marrow transplant. 

"In the beginning I did what most newly diagnosed patients do, I scoured the internet wanting and needing to know absolutely everything about this "MDS anemia thing" and came upon some very scary statistics that left me feeling like I was the only patient with this disease and very frustrated by the lack of quality and timely information. Then I happened upon the AA&MDSIF website and found that I was not alone in this at all.  I was so relieved to find such invaluable information on MDS (in so many different formats). I made it my mission to self-educate myself through the multitude of tools and resources available (especially the Online Learning Center). I have continually relied on the AA&MDSIF organization to help me make informed MDS treatment decisions and I was confident that a unrelated BMT would be my best option thru discussions with my doctors and by watching your webinars hosted by transplant experts on the subject.  I am now 21 months post transplant, doing well and my husband and I consider it an honor to support the important work of the AA&MDSIF including providing educational resources, important research and strong patient advocacy.  You have been a beacon of hope on my personal journey and I have always considered you a very important member of my healthcare team.  Thank you for all you do and for being there when I needed help and support the most."

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Anne Carry, mother of Alexandra Pegues

Dedications can be very personal. It is a way to remain close to that special someone on an important day in their life each year. For the past three years, Anne Carry dedicates May 7th to honor the memory of her daughter, Alexandra Pegues, who died of aplastic anemia.  May 7th was Alexandra’s birthday. This year her dedication includes a stanza from a Thomas Moore poem. 

Rachelle Hurwitz, in honor of her husband, Jerald who is fighting MDS

"AA&MDSIF was there for my phone calls and helped to save my husband’s life!  Together, our donations will allow research to continue, investigating causes and cures for our loved ones."

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Lynn Shotwell, in memory of her mother Theresa Frendt who battled MDS

"I am dedicating a day on my mother’s birthday.  I know how important personal stories are to raising funds and getting funding for research, as well as legislation." Read her dedication.

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Tim Lovett, 14-year aplastic anemia survivor

"Thank you for your hard work. It makes a HUGE difference in all our lives, those with, and those who have survived aplastic anemia, MDS, and PNH. Truly it does, in more ways than anyone could imagine.  I will do anything for AA&MDSIF, including making my gift every year."

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Stephen, PNH and aplastic anemia patient, 27-Year survivor

"I’m just a person who has learned to live with a manageable disease and who continues to grow in ways I never thought possible, thanks to AA&MDSIF.  I hope that you grow in your own unique way! I hope that you find answers, support, and hope, as I have. That’s why I give to AA&MDSIF, and I ask you to join me in giving back, too.  Thank you."

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Danielle Wooten, Aplastic Anemia Patient and Survivor, in honor of her parents

"I love the Dedicate a Day program,” says Danielle. “It’s a great way to give money to AA&MDSIF while also acknowledging the people who helped me through tough times.” Danielle is a 14-year aplastic anemia patient and survivor. “I am very thankful to AA&MDSIF,” she says. “The Foundation put me in touch with the doctors who saved my life and allowed me to make friends with fellow patients for support. I survived and have had the opportunity to fulfill all my dreams. I have a wonderful husband, a beautiful child and a successful career - all the things I dreamed of prior to the day I was diagnosed at age 24."

Danielle has dedicated consecutive days in June on the AA&MDSIF Calendar of Hope to her parents, Linda and Tim Rodeheffer. Her father’s birthday is June 19th. She chose June 20th to honor her mother.

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Debbie Kemp, MDS Patient and Survivor, in honor of Robin Roberts

In June, Good Morning America host Robin Roberts announced to the world on her program that she had MDS and would need to undergo a bone marrow transplant. Her announcement and the subsequent media attention have helped bring MDS out of the shadows increasing awareness and understanding.  Debbie underwent her own bone marrow transplant last year and is now doing well. She was inspired by Robin’s announcement and dedicated November 23rd, Robin’s birthday, to Robin and her sister Sally Ann, who was her donor. 

“I sincerely wanted to say "thank you" to Robin Roberts for having the strength and courage to share her MDS/transplant journey publically,” says Debbie.  “By doing so, she is providing much appreciated insight to those who have never heard of MDS or other serious bone marrow failure diseases.  She, along with her sister and donor Sally-Ann, have been instrumental in increasing awareness and encouraging those who can, to join the Be the Match Registry. I know that "Team Robin's" advocacy of these very important programs will help others and their families, giving all of us in the AA/MDS community continued hope, strength, and the dream of one day...even a cure."

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Heidi Nixon, in memory of her father Sam Nixon who battled MDS

“Why do I choose to donate this way? I donate in hope that someone will have more tomorrows with the person they love,” says Heidi, who lives in Wyandotte, Michigan. “In hope that one person will learn earlier in their MDS experience something that will make their journey easier. In hope that maybe, for just that one day on the calendar, people will think of him. My Dad. A great man who lived, who fought and whose fight, hopefully, will make a difference in the long run.”

According to his daughter Heidi, Sam Nixon was “the kind of father everyone deserves to have.” Sam passed away from MDS in August 2011 and now Heidi Nixon and her sisters Bridget, Tina, and Gretchen (“his girls”) dedicate his birthday, November 21st, to their father.

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Nik Mendrygal, in memory of his grandmother, Mary Langell

For the past two years, Nik Mendrygal of Lucas, Texas has dedicated October 31, Halloween, to his grandmother, Mary Langell, who passed away from complications related to MDS in 2007. Mary’s birthday was on Halloween.

“Every year we would talk to her and receive a card,” says Nik. “The running story she would tell us was that on Halloween she would hop on her broom and fly to wherever we were in the country, and for us to listen for the "tap, tap, tap" on the window, and that would be her.  It was funny, for someone as sweet and generous as she was for her whole life to compare herself to a witch, but that was just part of her personality.”  

He adds, “We all loved her and miss her dearly, and this is one way of keeping her alive with us. She passed away while we were pregnant with her first great-grandchild, who we named Olivia Mary Mendrygal, after her. I wish she could have met her, since she is just like her dad, who used to run grandma ragged. She was an amazing woman who came from nothing and raised a family in Detroit, mostly alone, and gave our family a start it wouldn't have had otherwise, and we'll always remember her and appreciate her for that, especially on Halloween when we'll still be listening for the "tap, tap, tap."

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Emelie Truscott, in honor of her brother, David

"In December 2007, my brother was diagnosed with aplastic anemia.  AA&MDSIF opened the door to continued suppor and hope for the whole family. This is why I give every year."