Bilingual Outreach Project to Benefit Seriously Ill Children

A new bilingual outreach projected, Here for You: Helping Children Cope with Serious Illness, was unveiled last week at the 32nd Annual Conference of the Association of Pediatric Oncology Social Workers (APOSW). This program is sponsored by the Sesame Workshop, the educational organization behind Sesame Street, and The Center for Advanced Illness Coordinated Care.

The “Here For You” DVD provides a story for children with Elmo and his cousin Chester coping with serious illness. In addition, you will find helpful information for discussions between children and parents, caregivers, or health professionals to encourage children to express their feelings and concerns about their illness.

Find out more about this project at: http://www.coordinatedcare.net/dvd.html

Have you visited CureSearch.org in Spanish? New in March 2008, the great childhood cancer medical content you find at CureSearch.org in English is available in Spanish as well. Visit CureSearch.org in Spanish today.

Pittsburgh Teen and Dr. David

I ran across two great articles this week in regards to childhood cancer that I want to share with you, one of which was shared with me by blog reader Mark in the Pittsburgh area. The other is from one of my favorite blogs, Doctor David's Blog.

The Pittsburgh Post-Gazette article by Mike White tells the story of an 18-year-old boy dying of cancer yet playing baseball (even getting a base hit) and preparing his family and others for his untimely passing. The article is titled, “Teen is running out of innings, but the game isn’t over.” It’s a must read:

http://www.post-gazette.com/pg/08125/878966-85.stm.

As the author states:

“But his story isn’t about dying. It’s about inspiring.”

My other favorite part of this article? The teen’s advice to the journalist who wrote this article:

"When you write this, don't overthink things," he said. "I've learned that. There are a lot of unanswered questions in this world and the reason they're unanswered is because if you think about them too much, you're always going to come up with different answers. So don't confuse yourself and think about this too much."

Isn’t that true?

The other story that touched me this week is from the blog Doctor David’s Blog: Musings of a Pediatric Oncologist. Dr. David is Dr. David Loeb, who is the Director of the Musculoskeletal Tumor Program at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University. Johns Hopkins is a COG institution.

In this particular post from May 10th, he ponders back to his first blog post and then expands his answer on the question that people often ask him, “What do you do for a living?” He summarized his previous 48 hours, which I found fascinating. I hope that you will take a few minutes to read this post: http://doctordavidsblog.blogspot.com/2008/05/surreal-life.html

The strength of a child battling cancer and a pediatric oncologist treating kids, these are the stories shared with you today. How can you help? CureSearch has so many ways you can engage and lend your support to childhood cancer research and issues. From attending/planning an event, attending Reach the Day next month, or a donation to fund the research, your participation is definitely needed and appreciated.

NCI Cancer Bulletin: Gene Architecture and Neuroblastoma

In the latest edition of the NCI Cancer Bulletin dated May 13th, the featured article highlights a study of genetic variants, specifically a region of chromosome 6, that may increase the risk of neuroblastoma. This study seems to be just the beginning into the investigation of other types of genetic variations in childhood cancer.

Two Children’s Hospital of Philadelphia researchers are quoted in the article as well as Dr. Stephen Chanock of NCI’s Division of Cancer Epidemiology and Genetics.

Read the full NCI Cancer Bulletin article here.

Learn more about neuroblastoma here.

M.D. Anderson’s CAYA Outreach Program

Do you read CancerWise, an online publication brilliantly put together by the M.D. Anderson Cancer Center team headed by Darcy DeLeon? In the May 2008 edition, author Sara Farris’s story “Program Helps Young Cancer Patients” describes the Child, Adolescent, and Young Adult (CAYA) Outreach program at the Children’s Cancer Hospital at M.D. Anderson. She also gives three patient examples of program success stories, from a five-year-old to teenagers. It's a great story! Check it out at this link.

Childhood cancer treatment is more than the doctors and nurses, although the role they play is so very key. Child life specialists, vocational counselors, hospital-based instructors/teachers, and social workers (your child's healthcare team) all work together for the benefit of the child being treated for cancer. Find out more about childhood cancer treatment in the parent and family section of CureSearch.org.

Who has been instrumental in your child’s cancer journey? Leave a comment and share your story with us!

Conquer Childhood Cancer Act Renamed, Approved by House Committee

I had an amazing opportunity yesterday that I have to share with you, those who have helped to make this happen. I attended the House of Representatives Energy & Commerce Committee meeting on Capitol Hill yesterday. In this committee meeting, Committee Chairman John Dingell from Michigan presided over the renaming of the bill to the Caroline Pryce Walker Conquer Childhood Cancer Act (HR 1553) in honor of retiring Representative Deborah Pryce’s daughter who passed away at the age of nine from neuroblastoma.

The outpouring of appreciation by the committee members of the work of Deborah Pryce on behalf of the childhood cancer community was overwhelming. Many special comments and appreciation were extended to Congresswoman Pryce.

In addition, another significant legislative huddle was passed. The Caroline Pryce Walker Conquer Childhood Cancer Act passed without amendment and after minimal discussion or debate.

Congresswoman Darlene Hooley, a House Energy & Commerce Committee member from Oregon's 5th District, along with many of her colleagues, added her approval for the bill, noting that Oregon resident Jenessa “Boey” Byers recently lost her battle with childhood cancer and had fought for passage of the Conquer Childhood Cancer Act.

Other members of Congress with positive comments regarding this bill included Chairman Dingell, Frank Pallone of New Jersey, Hilda Solis of California, and Lois Capps of California, among others.

What is next? The bill is now ready for consideration on the House floor. The Senate version (S 911) has also passed out of committee and is ready for consideration on the full Senate floor.

None of this advocacy success would be possible without your continued support. The childhood cancer community has a strong and passionate voice, and is using it well.

Over the past year, many thousands of letters and emails have been sent by childhood cancer advocates to their Members of Congress, and updates about the progress of Conquer Childhood Cancer Act have appeared on many hundreds of blogs, list serves, and web pages. What a magnificent grassroots community of support you all are!

If you have not yet done so, please reach out to those Senators who are not yet co-sponsors, to secure their support.

Read more on CureSearch.org about the Caroline Pryce Walker Conquer Childhood Cancer Act>

Teens Battling Cancer Bond Together, Meet Avril Lavigne

I ran across a great story about a group of teenagers at T.C. Thompson Children’s Hospital, a Children's Oncology Group institution, who recently had the chance to not only attend an Avril Lavigne concert together but also go backstage and meet her prior to the concert. This group, Adolescents Together Against Cancer (ATAC), is comprised of teens fighting cancer in the Chattanooga area.

It’s a great story about a group of teenagers making their way on their cancer journey and also T.C. Thompson Children’s Hospital. The Local News Channel 9 in Tennessee has the great story on their website: http://www.newschannel9.com/news/children_968389___article.html/group_lavigne.html.

Mother's Day Gifts Benefit CureSearch

Please pardon our usual discussion here on the CureSearch blog regarding childhood cancer issues to talk about something on most of our minds this week: gifts for Mother's Day. CureSearch has partnered with giftback.com to offer a great variety of gifts for Mother's Day with 10% of every purchase going directly to CureSearch to support childhood cancer research. Check out the special CureSearch bouquet. Your mom will love it, and CureSearch receives an extra $3.00!

Most likely you are going to purchase a Mother's Day gift for someone, and this is a way to give back to CureSearch. Please shop through the this giftback.com link as it links your purchase directly to donate the 10% to CureSearch. Thank you for supporting CureSearch though your Mother's Day shopping!

City of Hope in LA Offers Survivorship Program on May 8th

As part of their "Ask the Experts" free community lecture program, City of Hope, one of the California Children's Oncology Group member institutions, is offering a program on Thursday, May 8, 6-8 PM in their Platt Conference Center titled:

Steps to Healthy Living for Survivors of Childhood, Adolescent, and Young Adult Cancers

Lecture topics include:

--Health risks associated with treatment of cancer during youth
--Developing a plan for survivorship care
--Advocating for care
--Developing a healthy lifestyle
--Taking charge of emotional health
--The importance of survivorship research

For more information, call 1-800-535-1390 (ext. 65669) or check out the flyer online at the City of Hope website.

If you are in the Los Angeles area next Thursday and interested in cancer survivorship issues, try to make plans to attend.

Did you know that CureSearch.org has a section in the Resource Directory with survivorship information? Check it out at this link: http://www.curesearch.org/resources/resourceservice.aspx?ServiceId=9

Iron Hill Brewery and Restaurant Sweet on CureSearch

Through a generous donation from each “Double Chocolate Hill” dessert sold, the Iron Hill Brewery and Restaurant supports CureSearch and the childhood cancer research of the Children’s Oncology Group. In 2007, they presented a check for over $24,000 to CureSearch from the proceeds of their dessert. Their check presentation and celebration for 2008 is scheduled for this Friday, May 2nd, at the Newark, Delaware, location at 147 E. Main Street. If you are in the area, join us for this event at the Iron Hill Brewery!

More information about the event: http://www.curesearch.org/events/events_calendar/event_details.aspx?ID=6036

Others are blogging about Reach the Day and the Conquer Childhood Cancer Act…are you?

Thanks to those of you who are blogging/talking about the progress on the Conquer Childhood Cancer Act. As I mentioned in my previous post this week, it’s because of your efforts that this bill has seen great progress. We thank you on behalf of all of us who are actively seeking funding a cure for childhood cancer. Great progress has been made, but more is needed at a time when funding is stagnant or being cut.

Please check out the two blog posts below, both bringing to light the progress of the Conquer Childhood Cancer Act. Gabrielle at Fertility Notes also encourages folks to attend Reach the Day on June 22-24. Have you registered yet?

http://erinbuenger.blogspot.com/2008/04/60.html

http://www.fertilitynotes.com/2008/04/22/the-conquer-childhood-cancer-act/

Gabrielle brings up another good point: Even if you can’t go to DC for the event, consider putting together a local event in honor of Reach the Day. It can be as big or as small as you want… a rally on your state capitol’s steps or a gathering at a coffee shop. Maybe cake and punch at your local Children's Oncology Group hospital to honor the staff and patients.

Whatever you do, get involved! Your voice makes a difference!