Alliance for Childhood Cancer What's New

Alliance Asks for Inclusion of Pediatric Oncology Provision in PREA Reauthorization

Amanda Schwartz — Mon, 07 May 2012 17:43:54 GMT

In a letter to Rep. Anna Eshoo (D-CA) and Rep. Mike Rogers (R-MI), co-sponsors of the reauthorization of the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA), the Alliance asked for the reauthorization of the PREA to include a provision to assist in the development of pediatric oncology drugs. In order to strengthen the requirement that new drugs should be studied in children with cancer, the Alliance urges Congress to adopt a modifying proposal that could allow for the conduct of pediatric oncology studies when a relevant target or pathway is explicitly included in the product label for a new adult oncology drug.

B+ Foundation Becomes Newest Member of the Alliance

Amanda Schwartz — Thu, 29 Mar 2012 02:18:58 GMT

The B+ Foundation is the most recent member of the Alliance for Childhood Cancer. The Alliance

accepted the foundation’s membership application at the March 2012 meeting.

The B+ (Be Positive) Foundation is a national organization that funds cutting edge childhood cancer

research and provides assistance to financially-deserving families of kids with cancer. The B+ Foundation

honors the memory of Andrew McDonough, a 14-year old student and athlete who lead his team to

victory in a state championship soccer tournament, went into in cardiac arrest within 48 hours, and was

subsequently diagnosed with leukemia (AML). Although he wasn’t expected to live through the night,

Andrew fought for 167 days and went to Heaven on July 14, 2007. Throughout Andrew's illness, he

inspired thousands of friends and families. His blood type, B+, is the motto for the foundation that bears

his name. To learn more, visit the B+ Foundation website.

Alliance Endorses the Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act

Amanda Schwartz — Mon, 26 Mar 2012 19:03:22 GMT

The Alliance would like to express our strong support for the Pediatric, Adolescent, and Young Adult Cancer Survivorship Research and Quality of Life Act of 2011 (S. 1613/H.R. 3015). The mission of the Alliance for Childhood Cancer is to improve the diagnosis, treatment, and survivorship of children and adolescents with cancer, a goal we pursue through public policy initiatives. This legislation is consistent with our goals, and represents an important step forward in enhancing research and programs for young cancer survivors.

For complete information, view letters sent to House and Senate offices.

Save the Date: 2012 Childhood Cancer Action Day

Amanda Schwartz — Tue, 10 Jan 2012 21:33:32 GMT

The Alliance for Childhood Cancer is pleased to announce that this year’s Childhood Cancer Action Day in Washington, DC is scheduled for June 4-5, 2012.

This year, members of the Alliance for Childhood Cancer have come together to host a two-day event that includes issues and advocacy training, and pre-arranged Capitol Hill visits with Congressional representatives and their staff. Our goal: to provide the childhood cancer community - parents, children, and others - with the opportunity to visit Capitol Hill and advocate for the important childhood cancer issues currently before Congress.

Save the Date! Childhood Cancer Action Day in Washington, DC June 4-5, 2012

Event Participation: Online registration opens April 2, 2012.
Hotel Reservations: A block of rooms has been reserved the Hamilton Crown Plaza in Washington, DC, at a room rate of $259 per night. The hotel will begin accepting reservations on a first-come first-served basis on April 2, 2012.
Transportation to/from Washington DC is the responsibility of those attending.
Hotel information and event participation registration links will be sent to you on April 2, 2012.

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

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

We look forward to seeing you in Washington, DC next June.

If you have any questions, please contact amanda.schwartz@asco.org.

Alliance Hosts Booth at ASCO Annual Meeting

Amanda Schwartz — Thu, 09 Jun 2011 20:24:06 GMT

The Alliance for Childhood Cancer hosted a booth this weekend at the American Society of Clinical Oncology's (ASCO) 47th Annual Meeting in Chicago, Illinois as part of the ASCO Sponsored Patient Advocates section of the Exhibit Hall. The booth was an opportunity for Alliance members to display materials to the nearly 30,000 attendees and connect with other patient advocates.

Materials were available from:

The American Childhood Cancer Organization
The Association of Pediatric Oncology Social Workers
Chai Lifeline
The Children's Cause for Cancer Advocacy
CureSearch
Leukemia & Lymphoma Society
National Children's Cancer Society
St. Baldrick's Foundation

Thanks to all the Alliance Members who participated!

Alliance Holds Spring Meeting in Conjunction with Childhood Cancer Advocacy Day

Amanda Schwartz — Mon, 13 Jun 2011 02:55:56 GMT

The Alliance for Childhood Cancer held its Spring meeting on Tuesday, March 16th in conjunction with National Childhood Cancer Advocacy Day. At this meeting, the Alliance welcomed Dr. Peter Adamson, Chair of the Children's Oncology Group (COG), who presented the challenges facing COG due to budget concerns at the National Cancer Institute (NCI) and the consolidations scheduled for the NCI cooperative groups. As part of its advocacy plans, the Alliance is calling for stable and adequate funding for the COG in order to develop therapies that alleviate late-effects experience by childhood cancer survivors.

Dr. Michael Link, President-elect of the American Society of Clinical Oncology (ASCO) reported on the growing problem of oncology drug shortages. Dr. Link noted that while there has been great progress in the treatment of pediatric cancers, recent drug shortages are now raising concern that physicians cannot deliver proven effective therapies to patients with pediatric cancer. The Alliance hopes to advocate for solutions that alleviate the problem in the future.

Following the meeting, some Alliance members joined CureSearch, the Association of Pediatric Oncology Social Workers, the Children's Cause for Cancer Advocacy, Kids V Cancer, and the Leukemia & Lymphoma Society on Capitol Hill for the National Childhood Cancer Advocacy Day. These Advocacy Day participants stressed the importance of sustained funding for cancer research, informed lawmakers about the introduction of the Creating Hope Act of 2011 (S.606), and discussed the expected reintroduction the Childhood Cancer Survivorship and Quality of Life Act some time this Spring at nearly 150 meetings.