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DKMS is Driving for Donors with Pat

“One Child's Dream / Driving For Donors was started by 11 year old Leukemia patient Pat Pedraja. Pat found out that so many people with Leukemia and other blood disorders are dying because they can't find bone marrow donor matches in order to get a transplant. There is a critical need for donors (especially minority donors) on the National Marrow Registry and most people don't know how easy it is to join the Registry. Pat set out to raise awareness about the need for marrow donors and started a National Marrow Drive to add 2007 donors to the National Marrow Registry. Pat and his family drove across the country in an RV, to 32 different cities in 3 months and held marrow donor drives. There is a fee for tissue typing to add donors to the Registry so Pat raised over $140,000 by selling ad space on his bald (from Chemotherapy) head! Pat added over 5500 donors in 3 months and is continuing doing marrow drives, raising money and promoting awareness about the need for marrow donors.”

Pat is now 13(well it will be official on Friday) and continues his fight to register marrow donors and this year DKMS is joining his team. This summer DKMS will go “on tour” with the Driving for Donors RV and will recruit marrow donors nationwide. But right now he is on a 5 day bus tour of the Southeast with the Do Something Dirty Hands Caravan, be sure to check out his blog for constant updates about Pat and the Dirty Hands Caravan.

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Todd our Super Star

my hero

I don’t like to say that I have favorites when it comes to patients but if I did, Todd, it might just be Todd. He is one of those people that has the ability to make you laugh the moment you meet him. Todd is a leukemia survivor who received a marrow transplant from his perfect donor May 2007. Unfortunately, Todd recently learned that he needed more marrow cells from his donor and is awaiting another transplant.

Todd’s transplant story doesn’t sound that special at first and you perhaps may be thinking that he is my favorite because he is a cutie but actually I am quite inspired by him.

Shortly after Todd was diagnosed with leukemia, DKMS got a call from his family saying that they wanted to register marrow donors to increase Todd’s chances of finding his perfect donor. So while Todd was going through one of the most difficult times of his life, he was thinking past himself and recruiting marrow donors for the national registry. And even when he found his match, he continued to register donors. In the past year and a half Todd has been able to register over 3,000 life saving marrow donors. And even with the recent news that he needs more donor cells, Todd continues to be good humored about the whole thing. He even created a group on facebook so his friends can submit ideas as to how he should style his hair before he loses it. That’s just the kind of person he is. And we wouldn’t have it any other way

Alina, Todd and Katharina

Registering marrow donors at the largest blood drive in the US at Mizzou University

Maria, Todd and Andrea

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Linked Against Leukemia Gala

DKMS Americas Gala 2008

As you may know part of my job is to organize and manage some of our marrow donor drives. Well, last week we were able to add over 1,500 new people to the registry. This is primarily why I haven’t been able to post a blog in the past week. After drives we have to go through swab samples and double check that registration forms are filled out correctly and completely. But I did manage to sneak in some shopping, specifically for our 2nd annual Linked Against Leukemia Gala at Capitale.

Last year's gala was held in conjunction with the Bone Marrow Foundation but this year' event is a solo venture and I couldn’t be more excited.

Like last year DMC,(our celebrity spokesperson)from RUN DMC will be performing, with this year's special guest Sarah Conner. Comedian Mario Cantone, from Sex and the City is hosting the event. Cindy Crawford and Emanuel Chirico (Chairman & CEO, Phillips-Van Heusen, parent company of Calvin Klein, Inc.) are being honored. And Natasha Bedingfield will be performing a selection of songs, so I am quite happy.

Last year I was responsible for checking in guests and VIPs, but this year I am escorting a patient and her family to the gala. She is actually meeting her marrow donor for the very first time, on stage at the gala. I can’t say anything about her yet since she still has to remain anonymous to her donor, but I can guarantee that it will be an emotional moment in the program. And I promise I will have pictures up May 8th.

Until then enjoy some pictures from last year's gala at our Flickr page. And here are some personal pictures as well.

Angela, Andrea, Emy, Nicole, Tricia, Me (Ellie), Elivette, Neha, and Maria

Andrea, Maria, Alina, Me (Ellie), and Elivette

Alina, Katharina and DMC


And in case you were wondering this is what my dress looks like

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YouTube

If I had the Perfect Donor

Edwin, my boyfriend, always says I have the easiest job because I just get to play around online. And while it’s not easy, it is quite fun. The best part of my job is recruiting potential life-saving marrow donors but a close second is searching YouTube and recently I came across the following video about the need to find a marrow donor.

There are a lot of videos on YouTube about marrow donation but this is one of my favorites. It really makes me believe laughter is the best medicine, aside from a perfect donor match.

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Music is Saving Lives

Jessica from Music Saves Lives, Guest Blogs

I’m Jessica Smith, and I am a leukemia survivor. On September 15, 2001, when I was 13, I was diagnosed with Acute Lymphoblastic Leukemia. I was fortunate enough that three years of chemo-therapy put me into remission, I finished treatment when I was 16, and I’m less than a year away from being cured. As a result of the treatment, I have a bone degenerative disease called Avascular Necrosis, and have had numerous surgeries in hopes to correct the damage caused by it. I am in good health, and definitely take full advantage of life.
When I was diagnosed I was convinced that the doctors had changed my life in one sentence, I told myself that nothing would ever be the same. I was right, my experiences changed me in so many ways, I had to grow up fast, I learned what a precious gift life is, I became strong, fearless and was given a need to continue the battle even after I finished chemo. Throughout my treatment, I got to experience how many people devote their lives to battling cancer, to working on either raising awareness or money to find a cure (or even make my battle a little easier). I was touched at how much people give of themselves for this cause, and I have been inspired to want to do the same.

I am an Elementary Education major, I plan on being a Child Life Specialist when I graduate, and I work for Music Saves Lives. I saw the DKMS and Music Saves Lives booth at the Vans Warped Tour last year, and every time I’d walk by it I would wonder what it was. When I went online the next day to find out what it was all about, I realized right then and there that this was what I had to do with my life. I had to give back, pay back all of the amazing things that people did for me. I was determined that I had to work for this company, so I sent out an email with my story, and a resume, a week later I was surprised and excited to find out that I had an interview set up.

I love my job, I talk to people everyday about two things that I am passionate about, music and the fight against cancer. I get to travel around, see new places, meet new people and at the same time spread the word about the importance of both the donating blood and being on the bone marrow registry. I couldn’t ask for a better job, and I’ll be around this summer at different concerts talking to and registering kids, as marrow donors for DKMS, around the country.

Technorati Profile

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Music Does Save Lives

The Millenial Generation

With Bands like Halifax, Run Doris Run and Plain White Tees who would have thought concertgoers would take the time out to save lives?
Well, just ask the over 10,000 marrow donors who have signed up over the past year through the Music Saves Lives and DKMS partnership.
This reminds me about the 60 Minutes report about the Millenial generation and where they were categorized as having a sense of “entitlement” and being “self-centered.” But when hundreds of young adults, some just 18 years old, take the time out of a concert to make a decision to commit themselves to become a marrow donor and be available until their 61st birthday it really makes you think other wise.

Check out this video: Saving Lives in 2008 PSA



Add to My Profile | More Videos

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A Girl's Night Out

Rihanna Moon Sparkle Concert

Last night I attended the exclusive Rihanna benefit concert at the Highline ballroom. I had such a great time! Rihanna puts on such an amazing show.
Escada Moon Sparkle teamed up with Rihanna’s label Island Def Jam in support of her latest album Good Girl Gone Bad and her Believe Foundation to present a Girls Night Out! The event was organized by Escada, who Rihanna worked with to create their newest fragrance, Moon Sparkle! .
As much as I loved the show, my personal highlight was actually meeting all the patients and donors who were able to attend the concert as VIPs.
Sometimes it’s really so easy to become jaded and separate work from emotions but sometimes there are moments when you realize that what you do makes a difference. I had one of those moments Wednesday night when I met Danny.

Danny’s 14, a double transplant survivor, and my new hero. He is so smart, articulate and has to be the funniest kid ever! He had us all cracking up the entire show with his one liners. And as if he wasn’t amazing enough, he hand painted these knee high Converse sneakers for Rihanna that he was going to present to her after the show. I told him he better stay in touch because I want a pair of my own….he also won the heart of a reporter from People magazine who was so moved by Danny. He told her that he could make her a pair as well. Danny is the type of person that you are lucky to meet and the experience will last you a lifetime.

The night was a great success for DKMS, Rihanna and the Believe Foundation. It was worth the loss of sleep. You can see more pictures from the event on Flickr

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Welcome to DKMS Americas

Our First Blog

If you have stumbled across this section of our website you are probably wondering one of two things (or both)….who are these people and why do they have a blog?

Well allow me to introduce DKMS (and myself) to you.

DKMS or "Deutsche Knochenmarkspenderdatei" (German Bone Marrow Donor Center in English) was born in 1991 after Katharina Harf lost her mother, Mechtild, to leukemia. Katharina’s father, Peter Harf, and his family and friends worked tirelessly trying to find a life-saving match for her. Sadly, Katharina’s mother lost her battle, but continued fighting in her honor, so that one day all patients in need of a marrow transplant would have a fair chance of finding their life-saver. Katharina was only fourteen years old when she lost her mother.

In 2005, we expanded the DKMS mission to the United States, and since then, we have recruited and registered over 29,000 donors, and facilitated 35 donor and patient matches. But there is still much work to do. Last year, 35,000 cancer patients in the U.S. needed a marrow transplant. But only 3,700 received one. We have to make more matches happen. And, YOU can help us.

With the support of many of our friends, DKMS has been able to establish a donor recruitment program and national campaigns throughout the U.S. to raise awareness of leukemia and other blood cancers, important but often neglected diseases, and to increase the diversity of its donor registry.

That’s pretty much where I came in.

My name is Ellie Hernandez and I started working for DKMS in September 2006 where I stared as the Transport Coordinator, and then moved into Donor Recruitment and Internet Communications. I help to recruit the life-saving marrow donors needed to help populate the National Marrow Registry, so more patients with leukemia and other blood cancers can have a second chance at life.

The reasons we decided to have a blog were fairly simple.

~6, 000 people search for a transplant every day.
~Every five minutes someone is diagnosed with a blood cancer.
~Every ten minutes blood cancer takes a life.
~DKMS can connect a patient with their marrow match

This blog will share stories about patients and their donor drives. As well as any new and exciting news in the world of DKMS.

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