The Power of Social Media

In the past, I've discussed the financial challenges facing those of us who conduct research on rare diseases and the important role private foundations play in facilitating our work.  What I haven't mentioned before is the role social media can play in linking researchers with foundations.

As some of you may know, I'm on Twitter.  Well... sort of.  I've been on Twitter recently about as much as I've been posting on my blog.

But through Twitter, I found the Rally Foundation.  Honestly, I'm not sure I would have found them otherwise.  I'm sure glad I did, though.  They're a fabulous organization.  Founded by Dean Crowe, they have raised a ton of money to support childhood cancer research, and they have supported projects at 35 cancer centers across the country.  I'm honored to be on their medical advisory board.

And today I was thrilled to learn that they are going to fund a new project in my lab.

We have been studying a gene called WT1, which is turned on in a large number of sarcomas, including many cases of Ewing sarcoma, osteosarcoma, and rhabdomyosarcoma.  The role of WT1 in childhood cancer is unclear.  We have a theory -- that WT1 helps tumors to coax blood vessels into supporting their growth.  Money from Rally Foundation will allow us to test this theory, and to begin the process of identifying drugs that will block the activity of WT1.  Our hope is that, since WT1 is turned off in almost all noncancer cells in growing children, a drug that targets WT1 will be an effective treatment for childhood cancers with very few side effects.

We're obviously a long way from developing such a drug, but with the help of Rally Foundation, we're a step closer today than we were yesterday.

And every journey begins with a single step.

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Fishing, and the Kindness of Strangers

The ability of the internet to catalyze spontaneous events is not limited to Rickrolling or snowball fights. I want to tell a story of the power of the internet, and how it can harness all that is good in people, allowing total strangers to reach out to someone in need and do something special.


One of my patients is a 19 year old young man whose cancer has proved resistant to most every treatment he has tried. Last year, when he was in remission and feeling well, Make-a-Wish granted his wish to go deep sea fishing with his family. T had a great time, and his only regret was that he did not hook a fish large enough to need to be “strapped in.”

Last month T and his mother met with our team (me, the fellow, the nurse, and the social worker) to discuss participating in a clinical trial. The discussion was very frank, and it is clear T knows we no longer believe we can cure him. He told us he just wants to live long enough to go fishing one last time. Specifically, he wants to fish for tuna, and to hook one large enough that he needs to be strapped in to reel in the fish.

I don’t know anyone with a fishing boat. But I do have accounts on Facebook and Twitter. So I used Facebook to put out the word that I needed help finding a charter fishing boat for my patient to fish for tuna. One thing led to another, and within a few days I had the phone number of a fishing boat captain in North Carolina. This man hasn’t met me and hasn’t met T. Nevertheless, he offered the use of his boat for T and his family to go fishing, donating his time and offering to pay his first mate’s fee as well. All he asked was for some help with the cost of fuel. Enter Kind Stranger #2. This other man, someone neither T nor I has ever met, gathered together some friends and raised enough money to cover the cost of the fuel for a day’s fishing trip.

So, with the help of 21st century technology, we were able to arrange for T to go fishing for tuna off the coast of North Carolina, at no cost other than the gasoline to drive down there. Thank you, Captain S and Mr. K. The world would be a better place with more people like you in it.

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I went in to say "Good bye"

We knew this day was coming. Over the summer her cancer came back even though she was getting chemotherapy. We switched gears, giving radiation and chemotherapy aimed at controlling pain, no longer at curing disease. But that doesn’t make this day any easier.

Overnight, last night, it became harder to breathe and her pain worsened. A chest x-ray showed almost no air getting to her left lung. Hoping there was fluid that could be removed, she had a CT scan today; but there was no fluid, only tumor. Tumor that hadn’t been there 10 days ago.

I went in to the hospital today, to see her one last time before she went home. We watched some of the football game together. We talked about her kindergarten teacher, a brave woman who was a tremendous support before she died of breast cancer in August. She told me about the tombstone she wants – a softball diamond with a girl sliding into home plate, with a caption that reads, “Safe at home!”

But rather than complaining, or asking “why me?” the young woman and her family had different plans to discuss. Their community had raised a large sum of money to help cover medical expenses, and there is going to be a lot left over. As her father said, “The community has done a lot for us. We need to give something back.” So, on the day she was going home, my patient was deciding how she was going to help her community.

They decided to give some money to a fund established in memory of her kindergarten teacher. They decided to give some money to a neighbor who, because of sudden illness, had fallen months behind on his mortgage payments. And they talked about how they could still contribute to Ewing sarcoma research. “Just because this is happening to me, doesn’t mean I don’t want to keep trying to help,” she said.

Photo Credit
I hope that when I am in her situation, I can show half as much grace as she did this afternoon.

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It's Wednesday... The Doctor is Playing Golf

What a horrid, 50's-era cliche!

But today, it was true. This afternoon I played golf in a fundraising tournament for the Heather Brooke Foundation. This is a foundation named in honor of a patient with Ewing's Sarcoma that I once helped care for. When Heather passed away, her mother channeled her grief into helping others. The Heather Brooke Foundation exists to help conquer childhood cancer and to help and educate the families of children with debilitating illnesses.

Today was a beautiful day for golf... if you like playing in gale force winds! Of course, if you're as terrible as I am (other than Putt Putt, today is the 3rd time I've played golf in my entire life), the wind really doesn't matter so much.

But for my buddy Dean, who really plays quite well, the wind was a problem.


We played at The Timbers at Troy, a beautiful local course. It was a fabulous day, and everyone seemed to have a great time.

Last year's tournament raised enough money to buy a PCR machine for my lab. With the help of this machine, we generated the preliminary data that convinced the National Comprehensive Cancer Network to fund our clinical trial for patients with recurrent and refractory sarcomas. You should have heard the applause when I made that announcement at the post-tournament lunch!

Yes, it was a beautiful golfing day.

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Thank you, thank you!

How many of you have engaged in public speaking? You know, making a presentation to a large group of strangers. Did you ever have a nightmare about how things could go wrong?

This past Tuesday, my nightmare came true.

This past Tuesday I was invited to speak to the executive board of the Maryland Association of Student Councils (MASC). MASC represents all of the secondary schools in the state. Every year they choose a single charity to raise funds for. The amount they raise varies from year to year but is quite substantial.

In order to keep my talk from being too "dry," I thought I would interview the parent of one of my patients. I asked her what it was like to be the mother of a child with cancer. I taped her son, who is VERY cute. Then, I created a powerpoint presentation that alternated informative slides about our Sarcoma Program with clips of L and his mother.

The night before the presentation, I spent hours making sure the embedded movies played flawlessly. But I went to bed sure something wouldn't work.

Sure enough, when it was my turn to speak, the first slide with a movie in it came up.... blank.

Nothing.

Not even audio.

I tried to rescue the moment: "I know why it's not working! You're using a Mac to project the presentation. Hi, my name is David, and I'm a PC." At least that got the kids laughing.

Thankfully, some nightmares have a happy ending. The student running the Mac was able to show my movie clips, just not as an integrated part of the presentation. When I was done, the kids asked several insightful questions. And then, later that evening, we got the call.

The Johns Hopkins Sarcoma Program was chosen to be the designated group to be supported by MASC.

If anyone from MASC reads this, I just want to say Thank You from the bottom of my heart. It means a lot to me, and even more to the patients we care for, to know that you will be out there all year, spreading awareness and raising funds to help. I can't thank you enough.

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Standing Up to Cancer

On September 25, an unprecedented fundraising campaign will be launched. Stand Up to Cancer is a charitable group organized by Entertainment Industry Foundation. Uniting dozens of organizations, large and small, and anchored by a TV special that will air simultaneously on ABC, NBC, and CBS, Stand Up to Cancer is aiming to raise enough money to fund so-called “Dream Teams” of translational researchers who are poised to create the next generation of cancer treatments.

Although this sounds like a massive event, like all worthwhile causes, Stand Up to Cancer relies on real people. People like Ben Teller, an 18-year old diagnosed with Hodgkin’s Lymphoma who chose to “make cancer his b*tch”, who chose not to give in to despair, and who chose to inspire his friends and neighbors (and maybe you) to stand up and fight back.

Make A Wish

Being diagnosed with cancer is horrible. Being a kid with cancer is especially terrible, because this is a disease that robs kids of their childhood. Either because of the disease itself, the treatments, or side effects, children with cancer spend a lot of time in the hospital, become isolated from their peers, and even when they are treated successfully they often never fully recover.

Siblings are also affected by a cancer diagnosis. Parents shift focus toward their sick child, sometimes at the expense of the other kids. Some children donate bone marrow, which is not without its own risks. Childhood cancer truly affects the entire family.

One foundation that tries to make this a little bit better is the Make-A-Wish Foundation. This is a group that raises money to grant a single wish to any child with a life limiting diagnosis. The work they do is tremendous, and the smiles they bring to the faces of our children are priceless.

An article in a local paper tells the story of my patient Aaron and his fight with leukemia when he was an infant. Just last week, Aaron’s wish was granted – two local contractors designed and installed a customized playset in the family’s back yard. The joy in the faces of Aaron and his siblings says all that needs to be said.



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Johns Hopkins Team Sarcoma 2008

Early last month, more than 8,000 people worldwide participated in Team Sarcoma 2008, an international event designed to raise sarcoma awareness. Johns Hopkins had an event that we called All Wheels Welcome, to encourage participation whether you ride a bike, rollerblade, or have a wheelchair. This was the first year that Johns Hopkins hosted an event, and we had a great time!

Our group met on the morning of July 12 at a local mall, and we wheeled down the Baltimore and Annapolis Trail. My colleagues Dr. Kristy Weber (orthopedics) and Dr. Katie Thornton (medical oncology) were there, along with 50 participants.

Dr. Weber and I

We had young people as well as adults. We had bicycles and rollerblades and walkers.





Our research nurse, Margaret Fogle, did a great job marking the trail with both instructions and inspirational messages.





All of the participants left with a smile and a Sarcoma Knows No Borders bracelet.



Everyone is eager for an even bigger event next year!

Johns Hopkins Team Sarcoma

Team Sarcoma 2008 is an international initiative to raise sarcoma awareness. Next week, 30 medical centers and dozens of advocacy and patient groups will be holding events in 12 countries as part of the Team Sarcoma Initiative. Organized by the Liddy Shriver Sarcoma Initiative, this annual event has grown from a single event in 2003 to a multi-national event involving more than 5,000 participants this year.

Johns Hopkins will be hosting a Team Sarcoma event on Saturday, July 12. Entitled “All Wheels Welcome,” we will be biking, blading, and even wheelchairing along the Baltimore-Annapolis Trail from 9:00 am until 12:00 noon.



If you’re in the area and want to join us, email me and I’ll get you the details. The event is free (we just want to raise awareness), but we’d like to have some idea of how many people are coming.

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Fundraising with Ink

The family of one of our patients just did a really cool thing to raise some money for cancer research. The patient challenged a local radio celebrity to get a tattoo, and when he accepted the challenge, so did her parents and several other members of their family. Last week they all went to a local tattoo parlor and got tattoos. When he found out about my patient, the artist refused to accept any money for his work. Instead, all of that money was donated to a lab to support cancer research! How wonderful is that?

The Stomp Out Cancer Project

Stomp Out Cancer! What a great idea.

This is a terrific organization started by the friends and family of Steven Mackin, a young man who died of Ewing’s sarcoma. Ewing’s sarcoma is the second most common form of bone cancer, mostly striking children and young adults. This will be the second year that a group of musicians is putting together a compilation CD of indie music to raise funds for Ewing’s sarcoma research.

Last year I posted some “guest doctor” posts on the Stomp Out Cancer blog. This year, I am their official Medical Advisor. It’s been an honor to be associated with this group, and I am very excited about this ongoing project! Please take a look at our video announcement above and spread the word.

If you are in a band, or if you know someone who is in a band, and you want to submit music for consideration for inclusion on Stomp Out Cancer’s second CD, follow this link.

Cancer Fears…. My Patients

Cool Kids Campaign is a local group that raises money to help kids diagnosed with cancer (and their families). Sharon Perfetti, Executive Director and co-founder of the Cool Kids Campaign, thought the slogan “Cancer Sucks” might not sound so great coming out of the mouth of a 5 year old. She wanted to put a positive spin on such a negative diagnosis, and she came up with “Cancer Fears Me.” Read more about it, and check out the new line of Cancer Fears Me apparel here.