Pediatric Proton Foundation Supports ASTRO's Annual Meeting

The Pediatric Proton Foundation (PPF) was in full force at the Annual Meeting of ASTRO in Miami Beach, from Oct. 1-5, 2011.  Volunteers, Susan Ralston, Executive Director, and Ann-Marie Lewis visited from the headquarters area in Virginia Beach and participated in numerous key meetings with old friends and many new friends.  Susan Ralston states, "the proton community is a small world, indeed, and there are so many great people involved in the science and application, it is inspiring to see collaberation and fellowship in action."  The Pediatric Proton Foundation recently partnered with the National Association for Proton Therapy to release survey results from pediatric patients treated with protons in 2010.  The study is available here.

The Annual Meeting of the PPF was held at the Miami Beach Convention Center on Oct. 3, 2011 in attendance included founders, Dr. Sameer Keole, ProCure - Oklahoma City and Dr. Cynthia Keppel, Hampton University Proton Therapy Center.  Other top notch professional volunteers include proton therapy consultant Dr. Andrew Chang and Dr. Daniel Indelicato of the University of Florida Proton Therapy Center.  Dr. Vivian Porche, from MD Anderson, was unable to attend this year.  New applicants for the board were considered (stay tuned) and other important topics were discussed to include the 2011 Pediatric Proton Therapy Survey. 

Many thanks to the supporters of our foundation.  We are reminded daily about those special children and their parents who are fighting cancer today and every day.  Our mission is clear - we want to see every child that qualifies for proton therapy to get it because it reduces the radiation long term effects to healthy surrounding organs and tissues.  We support more proton centers to be able to serve the need.  We support proton therapy as the standard of care for appropriate cases of pediatric radiation cancer treatment.

Pediatric Proton Foundation to Hold Annual Meeting at ASTRO

The Annual Meeting of the Pediatric Proton Foundation will be held at ASTRO in South Miami Beach the first week of October.  Wow!  As we look back on the year, we have so many accomplishments to be proud of given our limited size.  For the first time we published a survey in conjunction with the National Association for Proton Therapy entitled, "Pediatric Proton Therapy in the United States: Patterns of Care 2010."  We were impressed with the findings which revealed 45 diseases were treated in 2010.  Children under 8 being the majority of those pediatrics treated.  We will be reporting these and other findings during our meetings and fellowship during ASTRO.  Stay tuned!

 Thank you for your continued interest in pediatric proton. 

National Association for Proton Therapy and Pediatric Proton Foundation Release First Snapshot of Treatment Data on Children at U.S. Proton Centers

National Association for Proton Therapy and Pediatric Proton Foundation Release First Snapshot of Treatment Data on Children at U.S. Proton Centers

Pediatric Proton Featured in Electronic Sarcoma Newsletter in August!

The Pediatric Proton Foundation is featured in this month's Electronic Sarcoma Update Newsletter (ESUN).  Since my son is a Ewing's Sarcoma survivor, the work of the Liddy Shriver Sarcoma Foundation has been of extreme interest to me since Day 1 of diagnosis.  Click here to read the article:  http://sarcomahelp.org/newsletter/community.html

ESUN is an online, open access, peer-reviewed, bi-monthly newsletter. In addition to feature articles that focus on specific sarcomas and current research and clinical issues dealing with these cancers, it has regular columns that abstract newly announced clinical trials and recent research findings). It also contains a column telling stories of courage and hope, a column that deals with a potpourri of topics of general interest, and updates on sarcoma advocacy and related groups. Our readership consists of physicians (oncologists and non-oncologists), nurses, patients, caregivers and survivors. ESUN contents are accessed over 30,000 times each month, giving wide visibility to the published articles. Additionally, a number of articles in ESUN have been translated by sarcoma physicians and researchers and appear in Chinese, French, Italian, Polish and Spanish to benefit the sarcoma communities within the respective countries.


Thank you Bruce Shriver for your dedicated and excellent work in the Sarcoma community.  Thank you for this opportunity to discuss the Pediatric Proton Foundation!

Breaking News...State of Pediatric Proton Therapy 2010 Soon to be Released!

BREAKING NEWS - August 8th


The survey of the State of Pediatric Proton Therapy 2010 is about to be completed. We had 100% participation!

The survey is currently undergoing peer review and will be presented by Dr. Daniel Indelicato of the University of Florida Proton Therapy Institute (volunteer for the Pediatric Proton Foundation) during the Fall Meeting of the Children's Oncology Group (COG) in Atlanta September 13 - 16, 2011.

The National Association for Proton Therapy (NAPT) and the Pediatric Proton Foundation will issue a joint press release immediately after Dr. Indelicato presents the survey results at COG. Highlights from the survey will include the total number of pediatric cases, the various types of diseases treated, and the age groups treated.

Thank you for your continued support for this initial and important proton community effort.  We look forward to your feedback.

Meet Executive Director, Susan Ralston, Pediatric Proton Foundation

Pediatric Proton Foundation Supports St. Jude Children's Proton Initiative

The Pediatric Proton Foundation was proud to be recently asked to provide a letter of support for St. Jude Children's Cancer Hospital as it makes a bid to build its own proton center. As many followers will know, St. Jude's announced an alliance with Univeristy of Florida Proton Center in the fall of 2009 to begin sending children suffering from brain tumors for proton treatment to Florida.


Before beginning construction, St. Jude Children's is required to obtain a certificate of need from the Tennessee Health Services and Development Agency.  This is where the Pediatric Proton Foundation came in to help by providing a letter of support. The hearing for this project is scheduled to occur in late August. If the project is approved, construction is expected to begin in spring 2012 and will hopefully begin treating pediatric patients by 2016.

In the Pediatric Proton's letter, emphasis was of course placed on children receiving protons.

"In a recent study conducted by the Pediatric Proton Foundation and the National Association for Proton Therapy, it was determined in 2010, less than 500 children received proton therapy treatment in the U.S. It is estimated that annually over 3,000 newly diagnosed pediatric cancer patients could potentially benefit from protons. St. Jude’s new proton center can help fill the need. By St. Jude’s adopting proton therapy it will help protons to become more widely known and accepted in pediatric cancer treatment."

We wish St. Jude's the best.

Pediatric Proton Foundation Active in Advocacy

The Pediatric Proton Foundation has been busy on Capital Hill. On May 9th, Executive Director, Susan Ralston, participated in a "Proton Therapy Briefing" with key legislators from both the Senate and Congress in Washington, D.C. Susan's role was telling her son's story and detailing the obstables parents face trying to have proton therapy covered through their insurance. Some of the highlights include:

*Denial is common for advanced treament usually due to "experimental/investigative/unproven treatment" The Pediatric Proton Foundation does not support traditional clinical trials in the case for protons as it relates to appropriate pediatric cases. Most pediatric radiation oncology experts agree that protons have a far superior treatment plan for children since protons have no exit dose, and less radiation is needed to get to the targeted tumor. No one needs extra radiation, but certainly not growing and still developing children!

* Appeals can take up to 180 business days, yet most pediatric protocols call for radiation in the early phase of the overall treatment plan.

*Insurers threaten,"if you decide to receive this service, you can be financially responsible for the total cost." A parent's inability to pay for medical treatment for their child is a top reason cited for financial bankruptcy in American cancer families.
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The Pediatric Proton Foundation is currently working on a first on a kind effort with the National Association for Proton Therapy to collect data from the Proton centers to help transparently report on the "The State of Pediatric Proton in 2010." We are excited to provide this collaberative effort and know this data will go far in helping more kids get to protons in the future. We almost have 100% participation from all the centers once again proving that when it comes to the kids, we all have heart. Thank you proton centers!

Congratulations to Dr. Keppel from the Pediatric Proton Foundation

The Pediatric Proton Foundation would like to congratulate Dr. Cynthia Keppel on her selection as the 2011 Virginia Outstanding Scientist! Dr. Keppel serves as a board member with our foundation, and she makes us proud!

Read more here: http://www.hamptonu.edu/news/012611_40_keppel.html