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.

Related Posts:

The Importance of Research Foundations
The Stomp Out Cancer Project
The Sarcoma Program Goes 21st Century

Music Can Heal

Well, maybe music can't cure cancer, but it can certainly heal the spirit.

Drew Seeley released a new song today that he wrote for my patient.

Watch the video here.

If you buy the song on iTunes, the proceeds go to support childhood cancer research.  Even if you don't buy the song, watch the video and enjoy the bliss on Brooke's face when Drew came to sing for her.

Priceless.

The Sarcoma Program Goes 21st Century

Modern technology impacts everything we do. The very fact that you are reading these words attests to how technology touches your life.

Well, the Johns Hopkins Sarcoma Center has engaged Web 2.0, too. If you follow this link, you will hear a podcast featuring my partner, Dr. Kristy Weber, the chief of orthopedic oncology at Johns Hopkins.

Bruce Shriver, one of the founders of the Liddy Shriver Sarcoma Initiative, asked me about chemotherapy for high grade sarcomas, and you can see that video here. An article in their online newsletter, ESUN, discussing my laboratory's research, is here.

Over time our group will be producing more podcasts. I will post links to them as they appear.

Related Posts:

Sarcoma Video

Hear Me on the Doctor Anonymous Show!

I'm on Facebook!

A Famous Parent

In the past, I have blogged about patients of mine who have made the news. This past week, while I was reading the newspaper before going to work, my eye was caught by an article in the Sports section about a man with a familiar name.

(Note: All personal information in this post is also seen in the article in the Washington Post, so there is no violation of confidentiality. Also, some links will require a subscription to washingtonpost.com to see.)

The article was about the head football coach at the University of Richmond, Michael London. The article spoke about Mr. London in glowing terms, talking about how he grew up in Richmond, played defensive back for the University of Richmond, and eventually became a detective in the Richmond Police Department’s street crimes unit.

See the video here.

Eventually Mr. London left the police department and became a football coach. I met Michael London when he was the linebackers coach for the University of Virginia’s football team. At this point his daughter had been diagnosed with Fanconi Anemia and needed a bone marrow transplant. The London family investigated several cancer centers, and settled on Johns Hopkins.

The Washington Post article related the story of Ticynn’s transplant, and how Mike felt about being the donor. Reading about a transplant I had directed, but from the father’s perspective, was very moving. We doctors rarely truly know how our patients perceive what they are going through. We usually only know what they tell us. This time, I got to read how a patient’s family dealt with a transplant without the filter that accompanies talking with a doctor.

I remember Mike, and I remember Ticynn. It was an honor to take care of the London family, and I’m thrilled Ticynn did so well (and continues to do well). Reading an article like this, and seeing how our medical encounter fits into the arc of Mike London’s life was a fabulous experience. I only wish I could see all of my patients’ lives in this way.

Related Posts:

Another Patient Makes News

One of my Patients is Famous

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.

Related Posts:

Team Sarcoma 2009

The Importance of Research Foundations

Fundraising with Ink

September is National Childhood Cancer Awareness Month

Photo Credit

You would think that we wouldn’t need a month to make people aware of childhood cancer, but we do.

Most people don’t know a child who has cancer. I meet people all the time who don’t even realize children can get cancer.

Some facts about childhood cancer worth knowing: Cancer is the most common cause of illness-related death in children. Cancer is the second most common cause of death in children, after accidents. 12,500 children are diagnosed with cancer every year.

What is being done to combat the illness that kills more kids than any other? Well, the National Cancer Institute is supporting research to the tune of approximately $170 million per year.

That my sound like a lot, but it isn’t. An article in Forbes, written by the mother of a girl with osteosarcoma, discussed some of these issues. Funding for pediatric oncology clinical trials, which are so expensive that they can only be done with the support of NCI or a pharmaceutical company that hopes to uncover the next blockbuster drug, is at $26.4 million per year and has been dropping steadily since 2003. This decrease in funding has had a real impact. A number of trials being conducted by the Children’s Oncology Group have had to close, and others have been reduced in size or delayed.

These clinical trials are responsible for one more astounding fact about childhood cancer: approximately 3 of every 4 children diagnosed with cancer will be cured. For some types of childhood cancer, the improvements have been mind boggling – acute lymphoblastic leukemia (the most common type of cancer in children) has changed from a disease that killed almost everyone who contracted it within 3 months, to a disease that is cured 75% of the time.

How did this happen? Cooperation. Rather than competing with each other, pediatric cancer centers have banded together into a single group, the Children’s Oncology Group, which conducts nationwide clinical trials. According to this article in Newsweek, up to 80% of children with certain types of cancer are enrolled on clinical trials. The comparable figure for adults? About 1%.

And while $26.4 million to finance clinical trials may sound like a lot of money, NCI funding for AIDS research in 2006 was $254 million, and funding for breast cancer research was $584 million.

What can you do to help? One concrete step anyone in the US can take is to contact their representative in Congress and urge him or her to appropriate the funds for HR 1553, the Caroline Pryce Walker Conquer Childhood Cancer Act. Sponsored by Rep. Deborah Pryce, whose daughter died of neuroblastoma in 1999. Although signed into law by President Bush in July, the money, $30 million, still needs to be appropriated.

Another way to help is to join the MileStones Virtual Walk for 12,500, sponsored by CureSearch, the organization that supports the Children’s Oncology Group. Or you can support the Committee to Establish a Childhood Cancer Awarenes Stamp.

With your help, we can continue to make progress diagnosing and treating childhood cancer, and cure even more children.

Related Posts:

Standing Up to Cancer
Sarcoma Video
Today is World Cancer Day

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.

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.

Related Posts:
Sarcoma Video
The Importance of Research Foundations

Hear Me on the Doctor Anonymous Show!

This Thursday, June 19th, at 9PM EST, I will be a guest on Doctor Anonymous' popular Blog Talk Radio Show.
You can listen in by clicking the icon.



For thorough instructions on listening in, click here.

I'd love to hear from you, so please call in ((646) 716-9514) with your questions or comments.

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.

Two Female Scientists Win the Prestigious Albany Medical Center Prize

Photo Credit
For the first time since its inception, the Albany Medical Center Prize in Medicine and Biomedical Research was awarded to two women (Dr. Elizabeth Blackburn of the University of California, San Francisco, and Dr. Joan Steitz of Yale University). Worth $500,000, the Albany Medical Center Prize is one of the largest financial prizes for medical research in the United States. The size of the award is second only to the Nobel Prize ($1.4million).

Dr. Blackburn’s research focuses on telomeres, the ends of chromosomes. These special “caps” help maintain chromosome size as cells divide, and prevent chromosome shortening which is associated with aging. Importantly, they also are key to the longevity of cancer cells, so a deeper understanding of their biology may lead to new ways to treat cancer. The enzyme activity that maintains telomeres is called “telomerase.” Dr. Steitz discovered snRNPs (called “snurps”), which are small pieces of RNA that help splice introns (intervening sequences) out of our genes. Telomerase and snRNPs are fascinating because they are both examples of enzymes composed of RNA (most enzymes are proteins). RNA is thought by many evolutionary biologists to be the first large molecule in the development of life, because it can both carry genetic information AND function as an enzyme.

Congratulations to Drs. Steitz and Blackburn for this terrific award!

Upcoming Conference on the Medical Care of People with Lower Limb Amputations

This is somewhat late notice, but Physicians for Peace is organizing and hosting a conference April 11-12, 2008 in Norfolk, VA entitled, "Collaborative Practice and Research to Improve Functional Outcomes for Amputees." Discussion will focus on the issues facing medical professionals who take care of people who have had lower extremity amputations. It should be a valuable experience. For more information, take a look here and contact conferencesupport@tpti.com.

The Latest Cancer Research Blog Carnival

Hear ye, hear ye! Cancer Research Blog Carnival #8 is up on The Skeptical Alchemist. Steppenwolf did a great job assembling these posts and dividing them into sections: News, Diagnosis, Therapy, and Quackery. As usual, there are some fascinating posts, and it is an honor to be included among them.

Go check it out. You'll be glad you did!

Top 100 Academic Medical Blogs

I just found out that this blog was named one of the top 100 Academic Medical Blogs. Thanks to the Online Nursing Degree Directory for the honor. There are a number of incredible blogs on their list, so take a look.

OMG! Cancer Conferences for Young Adults

I've attended and participated in many conferences about cancer. Most of them have been venues for medical professionals to present and discuss research, so it’s not surprising that they are not well-attended by patients.

Fortunately, the Leukemia & Lymphoma Society, and the I'm Too Young For This! Cancer Foundation are sponsoring two upcoming (free) conferences in New York for and about adolescent and young adult cancer patients.

The first is on April 10th and is a one-day educational workshop called 'Cancer in the Young Adult' in New York City. Go here for further details and registration information.

The second is on May 3rd and is for all 'cancer survivors aged 18 - 40'. It is taking place at Onondaga Community College in Syracuse, NY. The keynote speaker at the Syracuse conference is Matthew Zachary, the founder/executive director of the I'm Too Young For This! Cancer Foundation. Registration will open this week, so be sure to check back to their site as space is limited.

If you end up attending either conference, I'd love to hear about it!

Cancer Research Blog Carnival #7

It's that time again! The seventh Cancer Research Blog Carnival has been posted on Highlight HEALTH. There are some wonderful articles this time around, including discussions of the ethics of science, cancer genetics, and things that increase your risk for developing cancer (obesity and working the night shift, for example). All in all, a great group of articles that I'm sure you'll enjoy.

Sarcoma Video

Bruce Shriver, co-director of the Liddy Shriver Sarcoma Initiative, posted an informative video on YouTube recently, called "A Forgotten Cancer". The Liddy Shriver Sarcoma Initiative is a major sponsor of sarcoma research across the country, including in my own laboratory. Check it out below and consider participating in Team Sarcoma 2008.



Another powerful site is The Faces of Sarcoma, which features pictures of sarcoma patients from around the world. It's amazing how diverse the group is, including patients of all ages and races, and from every corner of the globe.

The Importance of Research Foundations

With the current falling NIH budget, the importance of private foundations to support laboratory cancer research is growing. This is particularly the case for the type of tumors I study, sarcomas, which are rare, making them less attractive cancers to spend part of the diminishing research budget on. I am grateful that foundations like the Liddy Shriver Sarcoma Initiative are there to fill in these critical gaps.

The Liddy Shriver Sarcoma Initiative just this week has funded three new research projects. I’m proud that mine is among them. I want to thank Bruce and Bev Shriver for their support, as well as the Arlo and Susan Ellison family and the families and friends of Christie Campbell, Jeremy Zimmer, Brad Rice, Peter Skelton, Paul Onvlee, Teri Marriage, Matthew Beaver, and Nick Gibboni in whose memory and honor much of these funds were donated.

Summer Camps for Children with Cancer and Blood Diseases

One of the worst parts of childhood cancer is how it robs my patients of their youth. They can’t go to school, they’re isolated from their friends, they see more pain, suffering, and death than children really should. We say they become “mature beyond their years” or “wise beyond their years,” but I wonder if this is just something we say to make ourselves feel better… as if maturity and wisdom are the silver lining within the cloud of lost innocence.

But we do things to try to salvage a sense of normalcy. One of the many ways we try to do this is through a week-long summer camp called ‘Camp Sunrise’. With the help of the American Cancer Society, Johns Hopkins, University of Maryland, and Sinai Hospital (the three centers in Baltimore that treat kids with cancer) all run ‘Camp Sunrise’ every summer. Our doctors, physicians assistants and nurses run the “Funny Farm” (the infirmary), and our kids come and play. For one fun-filled week, they get to be normal kids again. In an environment that normalizes their lives. It’s an amazing experience.

Pediatric cancer is not the only disease that interferes with childhood. The Hole in the Wall Gang Camp (and if you don’t know the reference, you MUST see this movie) provides a summer camping experience for kids with a variety of illnesses, including cancer and blood disorders such as immune thrombocytopenic purpura (ITP). In an email this week Craig Butler, from the ITP Foundation, asked me to help him publicize this camp experience. I’m happy to oblige.

Registration for the Hole in the Wall Gang Camp ends February 29. If you are interested or know someone who can participate, click here. Or if you’re interested in Camp Sunrise, click here.

Hopefully, I’ll be attending Camp Sunrise this year. I can’t wait! I’ll share pictures (with the permission of the kids and their parents, of course).

From the Camp Sunrise Website

Today is World Cancer Day

Today, February 4, 2008, has been designated World Cancer Day by the World Health Organization and the International Union Against Cancer. This year’s theme is I Love My Smoke-Free Childhood. As a pediatric oncologist, I have to say, I’m 100% behind this idea. Second hand smoke is a major pediatric health problem. 700 million children - almost half of the world's youth - regularly breathe air polluted by tobacco smoke. Second hand smoke exposure leads to chronic health risks:

· Increases a baby's risk of dying suddenly from unexplained causes (SIDS)
· Contributes to low birth weight in newborns and harms lung development
· Causes bronchitis and pneumonia in young adults
· Increases risk of ear infections, asthma, coughing and wheezing among school-aged children

Facts like these underlie smoking cessation laws sweeping the country. I’m proud that my home state of Maryland just recently enacted one.

Gregory Reaman, MD, the chairman of the Children’s Oncology Group, of which I am a member, said this: "As the world’s largest pediatric cancer research collaborative, the Children’s Oncology Group stands firmly with the world’s leading cancer organizations, demanding that all children have the opportunity to be raised in an environment where they are not exposed to the effects of smoking and second-hand smoke."

The fight against second hand smoke has a fascinating history. The first successful class action suit brought against the tobacco industry was brought by attorneys Stanley and Susan Rosenblatt in October 1991 in Dade County Circuit Court (Miami). The suit sought damages for diseases and deaths caused to flight attendants by exposure to second hand tobacco smoke in airline cabins. One element of the settlement of this case was the establishment of a not-for-profit medical research foundation with funding by the tobacco industry of $300 million. The Flight Attendant Medical Research Institute has already made dozens of awards, including one that was critical to the early success of my laboratory.

If you want to add your voice to those supporting the effort to eradicate tobacco smoke, click here.