Childhood Cancer Act Passes Through US House of Representatives

This just came in from the folks at CureSearch:

Dear Friends:

A great day in the fight to conquer childhood cancer, our legislation just passed the U.S. House! The final vote tally was 416-0.

Please post and disseminate as far and wide as you can. We at CureSearch are grateful to our wonderful grassroots community for spreading this wonderful news!

The more awareness we do now, the easier we will make it for passage in the Senate.

Here is the CureSearch press release:

CureSearch Praises Passage of the
“Caroline Pryce Walker Conquer Childhood Cancer Act”
in U.S. House of Representatives

Children with Cancer and their Families to Benefit from Landmark Legislation

June 12, 2008 (Bethesda, MD) – CureSearch National Childhood Cancer Foundation salutes the United States House of Representatives for passage of H.R. 1553, the “Caroline Pryce Walker Conquer Childhood Cancer Act,” which promises to significantly increase federal investment into childhood cancer research.

During markup of the legislation, the bill was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in memory of Caroline Pryce Walker, daughter of Congresswoman Deborah Pryce (R-OH), who succumbed to neuroblastoma in 1999 at age nine.

The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatments and research for children with cancer and their families.

“For far too long, children suffering from pediatric cancer have gotten short shrift on federal resources,” said Pryce, original author of this groundbreaking legislation.

“The bill we passed today dramatically expands federal investment into childhood cancer research and education, and will make an historic difference in the lives of the more than 12,000 children who will be diagnosed with cancer each year. A nation with our resources, our scientists, our committed doctors and oncologists, and our inherent and insuppressible fighting spirit can and should do more to put an end to so much suffering.”

Congressman Chris Van Hollen (D-MD), one of the original co-sponsors of the Carolyn Walker Pryce Conquer Childhood Cancer Act, stated that conquering childhood cancer has transcended partisan politics, and addresses a critical national issue that is finally receiving the attention it deserves.

“I am pleased that the House passed this important legislation, which will bring us one step closer to eradicating pediatric cancer,” said Van Hollen. “This bill will enhance and expand pediatric cancer research activities at the National Institutes of Health, establish a pediatric cancer registry, and increase informational and educational outreach efforts to patients and families affected by pediatric cancer. No child should have to experience and suffer the effects of cancer, and no parent should have to see their child suffer.”

CureSearch supports the life-saving research of the Children’s Oncology Group, the world’s premier cancer research collaborative. Treating 90% of children with cancer, the Children’s Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children’s and university hospitals across North America.

"The Caroline Pryce Walker Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer,” noted Gregory Reaman, MD, Chair of the Children’s Oncology Group. “Only research cures childhood cancer. On behalf of my colleagues in the Children’s Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our Congressional leaders.”

“On behalf of CureSearch, we applaud the steadfast leadership of Representatives Chris Van Hollen and Deborah Pryce and their colleagues in the House who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority,” said Stacy Pagos Haller, Executive Director, CureSearch.

Companion legislation in the United States Senate (S.911), sponsored by Senator Jack Reed (D-RI), cleared the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously in November, 2007. The Senate version of the Conquer Childhood Cancer Act currently has 63 co-sponsors; a full Senate floor vote on the bill is expected this summer.
# # #

About CureSearch

CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children’s Oncology Group (COG), the world’s premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,000 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.

This Week's Poster Boy?

Have a look.

I've never been a poster boy before. Are there higher standards I have to live by now? Do I have to stop swearing so effing much?

Will PosterBoyHood change Rob Ryan?

Late Night Leg Pain Blues: A Short Annotated History

When it first crops up, leukemia can present itself in all sorts of ways. Physical tiredness or lethargy. Bruising. Cuts that don't heal. Fevers. Deep bone and joint pain.

A month or more before Fergus was diagnosed (the timeline is murky) he claimed one day that his legs no longer worked. He was 4 years old. I remember him crawling from the car to the front door that afternoon, and sliding around the hardwood floors of our house that evening before bed. Somehow (and I wince when I admit this) I chalked it up to something like melodrama, or the side-effects of a very active imagination. The next day he seemed fine.

And yet a few weeks later it happened again, this time when Lauren took him and Norah to a science museum for the afternoon, and he spent the day wheeled around in a stroller.

By then, or soon after then, there were other warning signs too--illness, appendicitis-like stomach pain, unexplained anemia. It's a long story.

The day he was diagnosed, though, he was essentially free of symptoms. No fever. No aches or pains. That afternoon, our world turned upside down by the 20-ton thud of that word--leukemia--dropping into our lives, we lobbied successfully to take Fergus home for the night, to regroup before checking our little boy into the hospital for treatment.

That night, the bone pain returned for Fergus, deep and awful. We were awake all night, with Fergus begging us again and again to make the pain go away. We could not.

Fergus is 8 years old now. He has been off-treatment for almost 11 months. Lauren noticed him limping a little this morning, and asked him about it. He said something about stubbing his toe last night when the babysitter was here, or of twisting his foot somehow. He wasn't very specific. Lauren and I looked at each other briefly, then moved on. Then late this afternoon he said something about his other leg hurting too, but he couldn't really point to the exact source of the pain. Again, he wasn't very forthcoming when we asked about it. Lauren looked at his foot, but couldn't isolate any painful spots.

Fergus left the room to go about his business (getting ready for bed or whatever), and Lauren and I stood there in the kitchen looking into each others eyes. A small smile (wry? wan?) passed between us. We are so fucking powerless before this disease. Are these just the normal pains of an 8 year old boy re-learning how to run and jump and dance? Or is this the relapse, the cancer coming back? We have no way of knowing for sure.

I mean, what can you do? You shrug, sort of. Or smile that war-zone smile. And stand in the kitchen and hug.

This is supposed to be the easy part, you know? Shit, this is the easy part. And yet, the smallest of things (like--oh god--the smell of the hospital cafeteria yesterday, as Lauren and I walked by on the way to an appointment of hers), the smallest of things can trigger these emotions, put us on high alert, remind us again that we are still on the leukemia-family side of the fence.

Look, Fergus is probably fine. As far as we know (knock wood, cross your fingers, praise the deity of your choice) he could be done with cancer, and cancer done with him. There are so many other kids who are struggling with relapse, or complications, or worse. Honestly, we've had it pretty easy. We are the lucky ones. And yet, this is still Life During Wartime, and we can't just relax into our lives.

Elsewhere, kids have died this week of cancer. Lots of kids--someone else could give you a number; not me. Other little boys or girls have just been diagnosed, and their families are reeling, their parents near passing out (as I was) at their child's bedside. And children all over the world lie in hospital beds, or visit their local clinics, and toxic agents are passed into their stomachs, their veins, their spinal fluid. It's a crude approach in a lot of ways, but it's the only thing that they know to do. It needs study, refinement, more study, breakthroughs large and small.

Obviously, there are a lot of problems in the world. But please consider throwing your ten bucks at this one.

I'm just saying.

Special Thanks...

...to all of Bob and Michele's friends who have donated and/or sent us good vibes over the past few weeks:

Michael and Mary
Paul and Nancy
Shannon
Mike
Darlene
Lisa
Kelly
Karen
Laura
Adam
Jen D.
And probably some others!

You guys...rock. And, you know, you're really nice.

Another Father's Lament

Thanks to Angus for noting this piece on his weblog.

What follows are not my words--and I don't agree with some of the implications here--but Darren Gowen lost his daughter to leukemia in 1999, and his pain is clear.

So. An admonition: pain into action.

"Lessons Learned"
By Darren Gowen
Published September 8, 1999 in the Free Lance Star, Fredericksburg, Virginia

IF I SEE, HEAR, OR READ one more thing about breast cancer, I'm just gonna throw up," she said as we stood at the microwave in the visitors' lounge watching chicken reheat. It was late in the evening and quiet on the hospital's pediatric inpatient floor.

We were sharing a respite from our children's cancer treatments. Her son had osteosarcoma, a bone cancer. Evidence of his four-year battle included a missing leg and a shiny bald head, the result of surgery and chemotherapy to counter the cancer's every move.

My daughter had leukemia, a condition that had relapsed following a bone-marrow transplant. Bald too, she had difficulty walking, and had recently been informed that her treatment had failed and that she would not live to see the millennium.

If given a choice, parents would gladly choose for themselves to have cancer over their children. But cancer never gives them such a choice.

I've been thinking about the woman's words. The television and print-media blitz on breast and prostate cancer is a mixed blessing. The focus on detecting such cancers provides a needed community service to the extent it motivates individuals to contribute time and money to cancer organizations. Also, breast and prostate cancer are relatively common among adults. Over the last decade, for instance, the incidence of breast cancer ranged between 76 and 123 per 100,000 women. The mortality rate was 27 per 100,000.

But cancer is entangled in politics and corporate greed. Government agency budgeteers take advantage of politicians' pandering by spiking their proposals with much-needed requests for cancer research funds. Meanwhile, to boost profits, drug companies invest heavily in advertising and lobbying to influence the political funding process.

Like the mother of the boy with osteosarcoma, I do not appreciate this frenzy over adult cancers. I acknowledge bias, having recently lost a child to leukemia. Yet I wonder: To what extent does the emphasis on breast and prostate cancer hamper the detection and treatment of other cancers? Do the extra dollars going toward breast- and prostate-cancer research pull away dollars that might otherwise fund studies of other cancers?

The National Cancer Institute's proposed budget for the coming fiscal year indicates a clear emphasis on breast and prostate cancer. At the institute's Web site, I ran a word count on "breast" and "prostate" and got a large total. However, "child," "pediatric," "leukemia," or any other term connected to childhood cancer only sporadically showed up in the mammoth site.

The incidence of childhood cancer is 14.1 per 100,000. Although the mortality rate for children with cancer has decreased by 42 percent in the last two decades, cancer's incidence has increased 10 percent. For black children, the increase is 14 percent.

Particular childhood cancer rates have seen higher increases: soft tissue sarcoma and brain cancer, 25 percent; acute lymphoblastic leukemia, 20 percent. Though it appears that the incidence and mortality rates for childhood cancer are small next to cancers among adults, if analyzed in terms of lost years of life, childhood cancer is much more devastating to society.

The average age of mortality for adults with cancer is 50, which represents a loss of more than 20 years of life per adult. In contrast, a child who dies from cancer loses 60 to 65 years of life.

This incalculable loss, however, is not immutable if we understand that research on childhood cancer is often successfully applied to adult cancer. Cancer scientist John Lazslo calls childhood leukemia a "stalking horse for other cancers." When childhood leukemia is cured, he says, cures for the rest will soon follow.

The first cancer clinical trials involved children with leukemia. Children with cancer are usually otherwise healthy and can tolerate greater drug intensity than adults. Each child that has participated in a clinical trial to test a new treatment but succumbed to cancer has bestowed a precious gift--improved treatments--on those, including adults, later diagnosed with cancer.

Much of the early development of bone-marrow transplantation targeted children with immune-deficiency diseases and other causes of bone-marrow failure. Since then, both adults and children with leukemia and other cancers have received bone-marrow transplants.

Some important discoveries about the molecular biology of cancer have originated in pediatric studies. The study of the rare pediatric eye cancer retinoblastoma led to the landmark discovery of the first human cancer gene. The absence of this particular tumor-suppressor gene leads to several adult cancers--including prostate cancer.

The first applications of gene therapy in children with brain cancer and neuroblastoma, a cancer of the central nervous system, are under way at a children's hospital, and eventually will have adult applications.

Our daughter participated in the first comprehensive trial of an immunotoxin. The side effects from the experimental therapy were devastating, and the eventual result was not positive. But we know of several children who are alive today because of it. Treatments using immunotoxins will soon help adults with cancer and AIDS.

Children with cancer have given a tremendous gift to adults with cancer. Are we adults so generous?"

Source: http://home.att.net/~gowfam/lessons.htm

Current Donations

Thanks to all for supporting CureSearch National Childhood Cancer Research Foundation!

Donate Here....

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Please consider dropping me a line (baseballpajamas [AT] gmail [DOT] com) or leaving a comment on this site when you do, just to let me know (and so you can get your props). Thanks!

For the record, CureSearch is (quote) exempt from U.S. Federal income taxes under Section 501(c)(3) of the Internal Revenue Code and your donation is tax deductible to the extent provided by law (unquote).

Secure donations are facilitated by "SixDegrees.Org" and the "Network for Good".

SMALL PRINT and other donation info HERE
(includes donation info for the online-skittish)

Donating Online: The Small Print

I'm teaming up with an organization called Network for Good/SixDegrees to facilitate online donations to Curesearch NCCF.This organization tries to minimize the "overhead" associated with charitable giving by streamlining the transactions involved (i.e. by focusing on electronic transactions). Network for Good uses industry-leading Secure Sockets Layer (SSL) technology to keep your personal information as secure as possible.

Online donations are simplest via credit card or Paypal (if you have a Paypal account), but you can also make an "online checking" donation by entering some key information from one of your checks. However, due to the higher processing fees associated with online checking donations (that are ultimately incurred by the charity), the minimum donation amount for this method of donation is significantly higher (see below).

If you want to avoid the whole online thing and mail a check:

Info about donating by phone, mail, or FAX is here. Note that donating this way will not add it to the donation tally for the Mt. Rainier climb, but it still accomplishes the main thing, which is supporting the cause. If you do this, leave us a comment here so that we can give you the thanks you deserve.

Donating online through Network for Good does require that you "register" online with them. But their privacy policy makes it clear that they "will never sell, trade or rent your personal information to other individuals or companies." In other words, you won't be flooded with junk mail and spam after you donate through them.

Here is more about donating this way (taken directly from the Network for Good website (as of March 2008):

How do I make a donation?

Making a donation on Network for Good is easy. Network for Good's web site features a Giving Cart - a "shopping cart" that enables you to make a single donation or multiple donations to a variety of nonprofit organizations all in one visit. You will be asked to create a Profile for future giving, as a way for you to save your contact information and to store your donation history for future reference.

To make a donation, you first need to find an organization you want to support in the GuideStar database. To do this, go to the Donate section, and use the search tools provided; you may search by keyword, location, or organization name.

Once you identify an organization that you would like to support, click the Donate Now button. On the following page, enter the information requested, including the donation amount, your donation preferences, your donation designation (optional), and your donation dedication (optional). When completed, click the Add to Giving Cart button.

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Once you proceed to check out, you will be prompted to sign in to Network for Good. If you are a returning donor, enter your e-mail address and password and click Sign In. If you are a new donor, simply enter your e-mail address and click Continue.
Enter your billing information, as requested, and click Continue. On the following page, review your donation and billing information. If any of it is incorrect, click Change. If it is correct, click Complete Donation.

How does the money get to the organization of my choice?

Network for Good works through VeriSign to get payments from your credit card, PayPal, and/or bank accounts. If the charity you recommended has provided its electronic funds transfer (EFT) information to Network for Good, your donation will be electronically transmitted through our secure servers to the charity's bank account. If the charity has not provided EFT information, Network for Good will mail a check directly to the charity. Donations are sent to charities on the 15th of each month.

How does the Network for Good Giving System work?

Once you locate a charity that you would like to give to, click the Donate Now button and follow the step-by-step instructions provided. When you make a donation through the Network for Good Giving System, you can be certain that your charitable donation is 100% tax deductible and the organization of choice is a legitimate charity that is recognized by the Internal Revenue Service and in good standing.

Network for Good will confirm that your recommended charity is eligible to receive tax-deductible contributions and will process and distribute your donation to the charity you have selected.

As required by the Internal Revenue Service ("IRS"), Network for Good has exclusive legal control over any donation processed on our website. In the rare event that a charity you have recommended does not satisfy Network for Good's criteria for receiving donations (i.e., it has been classified by the IRS as a disqualified supporting organization, it cannot or does not accept donations, is not recognized by the IRS as a public charity, or is not in good standing with federal and state regulators), Network for Good will select an alternate charity to receive your donation funds.

Like any tax-deductible charitable contribution, any contribution using the Network for Good Giving System cannot be canceled or returned once it has been completed.
Network for Good, in technical terms, is treated as a "donor-advised fund," a 501(c)(3) organization that collects contributions from donors and distributes such contributions to 501(c)(3) organizations in good standing with the IRS recommended by you, the donor.

Network for Good will never refuse to distribute a contribution to a valid public charity recognized by the IRS because of philosophical differences or charitable preferences.

Is there a minimum/maximum donation amount?

For credit card/PayPal donations, the minimum donation amount is $10. For online check donations, the minimum donation is $200 since the fee for check transactions is $10. Online checks are a economical decision for higher dollar donations.

The maximum donation amount for PayPal is $10,000 and for credit cards it is $99,999. The maximum check donation is $25,000 per transaction and $50,000 per donor in the same day.

How is my check accepted over the Internet?

An Internet-based check transaction is similar to a paper check transaction except that Internet checks are processed electronically using the Automated Clearing House (ACH) system that banks use for electronic deposits and payments. This requires that you enter the numbers imprinted on the bottom of your paper check which are the bank routing (ABA) number and bank account number (combined they are also known as the MICR numbers, which stands for magnetic ink character recognition). Our check provider, TeleCheck, converts this information into an electronic item and then processes it through the ACH.

The fee for processing an online check donation is $10 for a single donation, or $5 per donation if multiple gifts are added to the giving cart. We require a minimum $200 for online check donations to make this option cost-effective for the recipient organization.

How will my checking account information be stored?

Your checking account information will not be stored with Network for Good and is only used for processing your donation. Your information is also used by TeleCheck for the purposes of processing your online check and anonymously retained for use in their positive and negative check database. At this time, Network for Good also does not offer recurring donations, but we hope to offer this functionality in the near future.

Why is the processing cost different for credit card donations and online check donations?

For credit card transactions, Network for Good is charged a variable percentage of the transaction by Visa, MasterCard, American Express, and Discover in addition to flat per transaction fees. For online checks, Network for Good is only charged flat per transaction fees, although these flat fees are considerably higher than through credit cards. Donors can choose to add or deduct the 4.75% of credit card transaction. The fees for online checks are automatically deducted; $10 for transactions containing 1 donation and $5 per donation for transactions containing more than 1 donation. Online checks are recommended for higher dollar donations.
Network for Good does not profit from fees.

Electing to contribute directly to a charity (through their own website) does not mean that you avoid paying processing fees; all charities incur fees with processing donations. Network for Good is explicit in explaining the fees and we give you the opportunity to cover them within the transaction. Even when you do not elect to cover the processing fee, using our website still saves your favorite charity money because our processing fees are extremely low. Many charities have to pay more to credit card companies.

Are the fees to process check donations the same as credit card/PayPal donations?

No, the fees for online check processing are a flat fee regardless of the size of your donation(s). For transactions containing 1 donation the cost is $10. For transactions contains more than 1 donation (if you are giving to more than one charity in your shopping cart) the cost is $5 per donation. These costs are deducted from your donation before it is paid to the recipient.

How do I locate the routing/account number on my check?

The routing number is always a 9 digit number and usually located between the symbols on your check. The account number is between 10 and 15 numbers and is usually located before the symbol on your check. Neither of these numbers includes your check number.

How will an Internet check transaction appear on my bank statement?

A complete description of the transaction will be included in your bank statement. This description will include most, if not all, of the following information: check number, merchant name, settlement date and check amount. This information appears on your statement where other electronic payments (such as direct payroll deposits and ATM transactions) are listed.