Childhood Cancer Action Day

With Congress poised to pass sweeping FDA reform, childhood cancer advocates visiting Capitol Hill next week in conjunction with Childhood Cancer Action Day (as part of a program sponsored by the Alliance for Childhood Cancer) are doing so at an especially critical time to present the following issues to legislators:

• New and more effective drugs for children with cancer – Helping to improve and accelerate access to life saving treatments is one of several pediatric drug development provisions included in FDA Reform Act of 2012, which is currently making its way through Congress. For complete details about the requests that advocates are making,
click here.

• Improved treatments for childhood cancer survivors – With more than 350,000 young cancer survivors living in the U.S., and three-fourths of them suffering a chronic condition or late-effect from their cancer treatments, better programs are needed for their follow-up care, psychosocial services, and adjustment to adult life as outlined in The Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act.

• Encouraging members of Congress to work together to help kids with cancer by encouraging House members to join the Congressional Childhood Cancer Caucus, a bipartisan group working to improve the lives of children with cancer.

You can support this effort by sending a message to your members of Congress (and asking your family, friends, and colleagues to do the same). Send a message through the St. Baldrick’s website.

Let’s work together to send thousands of messages to Capitol Hill on behalf of the 13,500 children who are diagnosed with cancer each year in the United States. 

About the Alliance for Childhood Cancer
Founded in 2001, the Alliance for Childhood Cancer is a forum of national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington DC to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer.

Members of the Alliance for Childhood Cancer include: 

American Academy of Pediatrics American Cancer Society American Childhood Cancer Organization American Pediatric Surgical Association American Psychological Association American Society for Radiation Oncology American Society of Clinical Oncology American Society of Pediatric Hematology/Oncology Association of Pediatric Hematology-Oncology Nurses Association of Pediatric Oncology Social Workers B+ Foundation Cancer Support Community

Chai Lifeline Children's Brain Tumor Foundation Children's Cause for Cancer Advocacy Children's Oncology Group CureSearch National Childhood Cancer Foundation/Hope Street Kids Lance Armstrong Foundation Leukemia & Lymphoma Society National Children's Cancer Society National Coalition for Cancer Survivorship Patient Advocate Foundation Pediatric Brain Tumor Foundation Sarcoma Foundation of America Society of Pediatric Psychology St. Baldrick's Foundation

Creating Hope Act

Please Take Action - May 14, 2012 "We must all hang together, or, assuredly, we shall all hang separately." Benjamin Franklin at the signing of the Declaration of Independence, July 4, 1776 The Creating Hope Act will stimulate research by pharmaceuticals and save kid's life's. As it makes its way thru the legislative process, KIDS V CANCER and we ask for your support at key junctures. TODAY RIGHT NOW IS A KEY JUNCTURE! Please take action today - 2 phone calls. THANKS!!   Here's the request from our friends at KIDS v CANCER: Last week, the US House of Representatives Energy and Commerce Committee passed the Creating Hope Act as part of a larger FDA bill!  We now have the Senate to go.   Tuesday, the Senate will consider an FDA bill on the Senate floor that does not yet include the Creating Hope Act.    We need your help to ensure the Creating Hope Act is attached to the Senate FDA bill.  Senators Harkin (D-IA) and Enzi (R-WY), as the Chairman and Ranking Member of the Senate HELP Committee, have the power to include this important language in the FDA bill. Please take 5 minutes TODAY to call Chairman Harkin’s and Ranking Member Enzi’s offices and tell them why this is important to you. We will only be successful if YOU take ACTION immediately.  Senator Harkin and Senator Enzi need to receive hundreds of calls before 5pm EST today  to understand that it is important for pediatric cancer patients. YOUcan make the difference.   Make your calls and then please share this action alert via email, Twitter and Facebook. Below are the numbers for Harkin & Enzi’s offices.  Please speak with the staff member who answers the phone, using the script below.  If no one answers, leave a voicemail.  Be respectful to the staff, but express your urgent concern.  Chairman Harkin (D-IA):  202-224-3254 (if you live in Iowa please say so on the call) Ranking Member Enzi’s (R-WY) :   (202) 224-3424, Toll-Free (888) 250-1879 (if you live in Wyoming please say so on the call) Sample Scripts: Parent/Family/Caregiver/Friend:  I am a parent of a child with cancer.  I am calling you because I’m concerned that the Senate FDA bill does not include the Creating Hope Act, legislation to promote drug development for pediatric cancers and other pediatric diseases.   Please make sure the Creating Hope Act is included in the final version of the FDA bill.  My child is (a pediatric cancer survivor)/(undergoing treatment for a pediatric cancer)/deceased. Physician/researcher:  I am a physician working to treat pediatric cancers / rare diseases calling because I’m concerned that the Senate has not yet included the Creating Hope Act in the FDA bill.  The Creating Hope Act provides market incentives for new drug development for pediatric cancers and other rare pediatric diseases.   Please include the language from the House FDA bill’s Creating Hope Act in the Senate FDA bill.  Please share how your calls went on our Facebook page https://www.facebook.com/kidsvcancer  or info@kidsvcancer.org. More information on The Creating Hope Act: Although the United States is a leader in drug development, almost no drugs are being developed for American children.  Some 27% of those affected by one of the 350 most “common” rare diseases die before their first birthday because there are inadequate or no drugs for these babies.   In addition, in the past 20 years, there has been only one initial FDA approval for a drug for any pediatric cancer.   Because the market for pediatric rare disease drugs is small relative to other diseases, pharmaceutical companies cannot develop drugs for children with serious and rare diseases. The Creating Hope Act generates market incentives for drug development through the establishment of a priority review voucher for pediatric rare diseases.  Under this program, a company or institution that develops a drug for a pediatric rare disease and receives FDA approval also receives a voucher.  That voucher comes with rights to priority FDA approval for any other drug which results in the second drug getting to market many months earlier.  The voucher would be fully transferable. The Creating Hope Act does not require any tax payer spending and has bipartisan support.  It has 168 cosponsors in the House.  On September 23, 2011 Representatives Michael McCaul, G.K. Butterfield, Sue Myrick, and Chris Van Hollen introduced the Creating Hope Act (H.R. 3059) into the House.  It was introduced into the Senate on March 17, 2011 by Senators Robert Casey, Scott Brown, Sherrod Brown, Al Franken, and John Isakson (S. 606). On May 9, 2012 the House Energy and Commerce Committee passed the Food and Drug Administration (FDA) Reform Act of 2012, which includes the Creating Hope Act as Section 865.   Chairman Upton and Ranking Member Waxman agreed to Section 865, which modifies the Creating Hope Act to be a demonstration project of three vouchers with a sunset and GAO evaluation. The Creating Hope Act fills an important gap in policy initiatives to encourage drug development for pediatric rare diseases.  BPCA and PREA only provide for relabeling of adult drugs for use by children, not for new children’s drugs. The Creating Hope Act builds on the “FDA Amendments Act of 2007,” which established a priority review voucher for drug development for neglected tropical diseases. The Creating Hope Act of 2011 closes a loophole that allows pharmaceutical companies to receive vouchers for drugs that are already marketed abroad and allows the vouchers to be transferable.

Visit People Against Childhood Cancer at: http://curechildhoodcancer.ning.com/?xg_source=msg_mes_network

Creating Hope Act

On behalf of Nancy Goodman, Founder of Kids v Cancer, and kids everywhere, today we ask for your immediate support for the Creating Hope Act!! Kids v Cancer has reached a critical point in the passage of the Creating Hope Act!

Thanks to the thousands of you who wrote their members of Congress and urged them to cosponsor the Creating Hope Act, 150 Representatives have pledged their support.

We hope to pass the Creating Hope Act by attaching it to a major piece of legislation, PDUFA. However, at this time, the draft House Chairman's mark has been issued without the Creating Hope Act. We are disappointed, but we still can get it attached if we act now.

We can still ask that the Creating Hope Act be attached to Chairman Upton’s mark -- eg part of the first draft of PDUFA considered by the Energy and Commerce Committee of the House of Representatives. In addition, we can ask Congressman Bilbray to introduce the Creating Hope Act as an amendment to PDUFA.

Let's give one final push -- along with everyone you know, please call these Members of Congress listed below TODAY and urge them to pass the Creating Hope Act!

For each call, please tell the receptionist why you care about pediatric cancer and other pediatric rare diseases.

There has only been ONE initial FDA approval for a pediatric cancer drug in 20 years! We need the Creating Hope Act to change this!

Please make 3 calls:

Congressman Upton
(202) 225-3761
The Ask: “Please include the Creating Hope Act in your Chairman’s Markup of the Prescription Drug User Fee Act- PDUFA.” (pronounced pih-Du-fa)

Congressman Bilbray
(202) 225-0508
The Ask: “Please urge Representative Bilbray to include the Creating Hope Act in his Chairman’s Markup of the Prescription Drug User Fee Act- PDUFA. If the Creating Hope Act is not attached, please introduce it as an amendment to PDUFA” (pronounced pih-Du-fa)

Congressman Waxman
(202) 225-3976
The Ask: “There is an immediate need for innovative drug development in childhood cancer and other rare pediatric diseases. Please support the Creating Hope Act so we can get new drugs to children as quickly as possible!”
(Explanation: As the ranking Democrat, it’s important that Congressman Waxman not oppose the Creating Hope Act even though it grants benefits to the drug industry.)

Please also let us know you called! Post on the Kids v Cancer Facebook wall, or email us at: Adrienne@kidsvcancer.org.

On behalf of sick kids everywhere, thank you.

Thanks PAC2!!

J. T. Gaskins - Give Me Your Head With Hair

Cancer Survivor Kicked From School for Growing Long Hair

If you want to support J. T. Gaskins, sign his petition right here: here.

The Fighting Goalie

I have long thought teenagers with cancer seem very isolated. They face a very unique battle, one that is difficult the rest of us to fully understand. They have a full adult understanding of what is before them. But they have very little life experience to help them deal with events that few adults handle well. Just as they are tasting life, it is ripped from them.

They are at an age that begs for independence, but are forced into dependence on others. Just when they should be out seeking and learning new relationships, they are isolated around family, nurses, and doctors. While their friends are stressing over what to wear and who to date, they face decisions involving sterility, amputation, and life itself.

When I was 15, the greatest fear in my life was a delay in getting my learners permit to drive. Tyler was diagnosed with cancer at 15, one week before getting his learners permit. Suddenly the questions changed from "when" to "if". Would he ever drive? Would he return to school? Would he fall in love, ever date, ever get married? Would he have a career?

The questions are never asked, but they hang in the air.

The response from these young adults, from my observation, is amazing. Their singleness of purpose, their fight, their passion for life, is life something I had never witnessed before. They demand information and face the answers with courage. And they respond to everyone with an outpouring of love and compassion.

One of the greatest illustrations of this is Christina O'Bryan. In her small body, she has more fight per pound than anyone I have every witnessed. At 19 years old, she has been fighting for over 6 years. And her fight has never diminished.

They say teenagers are spastic and unfocused. But how many of us have focused non-stop on a single objective for over 6 years?

Christina is living, walking proof that cancer does have limits. Even when cancer Christina's hip, she refused to slow down. Doctors said she must give up her passion for hockey, but "give up" does not exist in her vocabulary. So Christina became a goalie on a sled hockey team, and has risen the the highest level she can in the sport. You see, cancer can not touch the soul, can not touch the heart, has no access to the spirit.

And I know something that cancer has not yet figured out...that a fighting goalie will never lose.

Always fight to win.

Tyler's Christmas

For the 3rd year, Tyler went collected money to purchased kits for stuffed animals for the cancer kids at Children's. This was his best year so far, with over 250 gifts delivered to the kids!

Always fight to win!

The Flying Feather

Four years ago, Thanksgiving began on the cancer floor at Children's Hospital. This year, it began with us all healthy, running the 4 mile Flying Feather race.

We have so many reasons to be thankful.

Four years ago we were one of just a couple of families remaining on the cancer floor at Children's Hospital. The hospitals do everything possible to get the cancer kids home for holidays. But Tyler was in isolation and doing bad. We have just learned that, while on chemo for Burkitt's Lymphoma, Leukemia had moved into his bone marrow and central nervous system. So we had Thanksgiving dinner spread out on the air hockey table in the play room on the cancer floor.

Then, about 10am, doctors came in with the latest scans and blood tests. They said they would allow Tyler off the cancer floor for three hours. We packed up all the food and plates and ran home. It was the first time Tyler had been allowed out of the hospital since being diagnosed. We knew there was an ugly and difficult road in front of Tyler. But for that day we were all together. We celebrated each other, and we celebrated the now. Everything from tomorrow on was unknown and ignored.

The following months were ugly, just as the doctors promised. Treatments that took Tyler closer to death than I thought was possible. And Tyler continued to fight. Nothing could stop him, even as we traveled other cancer facilities in Boston and Houston.

And now his is a victor. A 15 year old fighter that beat three stage IV cancers. And this Thanksgiving we all ran the Flying Feather. Life is worth living. Life is worth fighting.

Always fight to win.

Fitness and Cancer Survival

Health and good estate of body are above all gold, and a strong body above infinite wealth.--Ecclesiastes 30:15

Almost daily I am stopped by people who ask, "How is Tyler doing?" The simple answer is "Fantastic!". His recovery is nothing short of a miracle.

Tyler beat a cancer that had spread aggressively through almost every major organ in his body, his bone marrow, and his central nervous system. And, after beating cancer, he avoided the long list of physical problems we were told to expect. His liver, heart, lungs, and immune system have all fully recovered. He looks and feels great.

I am often asked why Tyler had such a miraculous recovery. Well, there were a lot of reasons. And one of the essential reasons has been Tyler's focus on health. The truth is we hammered him with treatments. His physical conditioning allowed us to push well beyond standard protocols.

And once he beat cancer, he jumped back into life with enthusiasm. He ran the last portion of the marathon with me. He regularly works out, plays basketball and football. He's now playing a lot more soccer (largely due to it being a favorite sport of his girl friend).

I believe his attention to total health has been a critical (and often ignored) factor in his survival and recovery.

Below is an article by David Haas. He emailed it to me, and I think it is worth the read.

Fitness and Survival Rates

A diagnosis of cancer doesn't define who you are. No matter what stage of cancer you are in, you are still you, and capable of making decisions that will help you stay as strong as you can be as you battle your cancer. Whether you have just been diagnosed, are undergoing treatment or have reached a remission, it is important to keep yourself feeling as good as you can feel. If you are now cancer free, take advantage of your new chance to follow a fitness program to maintain your health and feel good.

Studies show that the benefits of staying fit and healthy not only reduce the risks of many types of cancer, but can improve the survival rates after the doctor has given a cancer diagnose.

The National Cancer Institute at the National Institutes of Health report that research has indicated that physical activity helps survivors by reducing the fatigue that many experience as part of their treatment and recovery. Working to become more fit through a regular program of physical activity will assist energy balance that serves to improve the quality of life during the time the survivor is in treatment, recovering from treatment and throughout the lifetime.

Studies funded by the NCI are working to find out how fitness plays into improving the prognosis of cancers as well as making survivors gain more energy and looking for evidence that would indicate if it plays any part in the reoccurrence of cancer.

If you have been diagnosed with cancer, whether it is a common diagnosis such as skin cancer or a rare cancer such as mesothelioma, discusses your physical fitness routine with your doctor during each stage of treatment and recovery. Work with your medical care provider to make sure that you exercise program doesn’t interfere with treatment and make adjustments to it as needed. Don’t feel discouraged if you feel that you aren’t making progress on your way to becoming physically fit. Fatigue and other side effects of treatment may be playing a part in how you feel by emotionally and physically.

Ask your medical care provider for information on physical fitness programs that are available in your area. Many times, cancer support groups sponsor sessions for both cancer patients and survivors. The social support of others who have faced the same health obstacles as you are facing often helps motivate the continuation of an exercise routine.

The 99 Percent

Last month I ran the Columbus marathon. This was my 4th marathon, one for every year since Tyler was diagnosed with cancer.



Most people don’t see me as a runner. Even while on chemo, Tyler laughed hysterically about my marathon plans. He informed me I was, “Too old, too slow, and too fat!” Its true Nike is not likely to sponsor me. Sports Illustrated has never called for a photo shoot. And no one has ever asked if I was from Kenya. But for 5 months I did the grunt work of 575 training miles, and then completed the marathon.

During the race something dawned on me. Less that 1% of people have ever run a marathon. Therefore, old, slow and fat, I’m still included in the top 1% endurance athletes in world. I got pretty impressed with myself.

As the race went past the state capital, there were 4 or 5 of the “occupy” protesters. They were holding signs and chanting, “We are the 99%! We are the 99%!” I started waiving and yelling, “I’m the 1%! I’m the 1%!” They stopped chanting, and just stared at me.

I wasn’t making any political points. I was just hurting and tired and it seemed funny at the time. Besides, I’ve never wanted to be part of any 99%. It’s too crowded. I would rather be among the 1% in just about anything.

Around the 15 mile mark I began to really struggle. Rounding the corner, the band was playing “You Get What You Give”. The song it home. It was a favorite of A.J. Piniewski, who battled the same cancer at the same time as Tyler. I thought about the courage of A.J., Tyler, and so many other children fighting cancer. And I remembered why I was running, and the disciplines necessary to reach the goal.

I began to think about the 1% that really matters. I started thinking about the 1% that change the world, that truly do the impossible. 200,000 women get breast cancer each year. But what percentage responded like Nancy Brinker, starting the Komen Race For The Cure? 8,000 get testicular cancer, but how many responded like Lance Armstrong?

And then there are the numbers I care most about…two classrooms full of children who are diagnosed with cancer every single day. What am I doing to end childhood cancer? Are my efforts in the top 1%? Completing the marathon didn’t require me to be a superstar athlete. To be among the 1%, I just needed to focus and take the disciplined steps necessary to achieve the goal. As A.J. said, “You only get what you give”.

When Bruce Cleland’s daughter was diagnosed with Leukemia, he decided to train people for marathons. His Team-in-Training has now raised over $1 billion for cancer research. The parents of Alexandria Scott raise $15 million a year through Alex’s Lemonade Stand. The gang at St. Baldricks are adding $25 million each year to the fight. Bob Piniewski, A.J.’s dad, is pulling groups together, informing, educating, and continuing the quest of 1 million signatures on his petition.

So what am I doing? Am I a spectator? Am I among the 99% on the sidelines, waiting for “someone” to do “something” about childhood cancer? Or am I willing to do the grunt work necessary, to be among the 1% who are changing the world?

Here is the truth about childhood cancer: There is a cure. It is out there. We just need to find it. So I will run another mile, raise another dollar, write another congressman, and sign another petition. I will continue to help parents looking to new options, raise funds for families, and speak to groups that will listen. I will act, and never wait on someone else to do the work. I will fight, and fight to win.

And I will remember that the only person I control me. Therefore, what’s going to be, is up to me.

I will be the 1%.

Tyler continues to do great. He is cancer free and healthy. He is now a sophomore at Ohio State.

A.J. did not survive. He passed away at age 14, and is a legacy to the need to find the cure NOW! A.J.'s dad, Bob Piniewski runs People Against Childhood Cancer. a great source for information.

Christina O'Bryon has been fighting cancer through all 4 of my marathon runs. She continues her fight with incredible strength and courage. I dedicated my run to her fight, and there is no doubt she will beat cancer. She is a fighting goalie that will never lose.

The Home For Home - $400,000

We did it! $400,000!

Yesterday was the end of a year long project, to raise money for cancer research. We built a home with Charles Ruma and Virginia Homes, with all proceeds going toward cancer research.

The home was completed, and we sold it a auction yesterday. Winning bid...$400,000!

100% of all proceeds go to cancer research. 90% to new research facility at The James cancer hospital at Ohio State, and 10% going the Lance Armstrongs LiveStrong organization.

Thank you to the Ruma family, and the many, many people that made this all possible. I'll update with pictures as soon as I get them.