You will notice we have a new look. I found out the "beam of hope" was used by the NAPT and Loma Linda and many, many others and I really want to develop our own identity so we will now use our motto, "proton - because the smallest things matter most."
This has been an active week for the foundation. We have been contacted by two new proton centers one in Oklahoma that will be opening their fixed beam gantry room this July, and also Procure's Chicago center. We are in the process of redesigning some of our materials and plan to do a mass mailing to all the centers which will include our materials and also heart shaped cookies just to make sure the word gets out about our foundation.
I also had a chance to talk with Len Artz the head of the National Association for Proton Therapy and it turns out he has family here in Virginia Beach so we plan to meet face to face in a few weeks when he is visiting. Len explained to me what his organization does and it really is the voice of proton therapy as each center is a member of his organization. He is a wealth of knowledge regarding the history of each center, the business model and insurance issues.
We also started some search engine optimization strategies and the foundation's website has experienced increased activity each and every day since its launch the beginning of May. We have had visits from 17 countries! We also started to receive donations and we are very appreciative. Every dollar will be put right into making the goals of the foundation a reality. Every child that gets proton versus photon may enjoy a lifetime free from radiation damage to healthy tissue that surrounded their cancer site. We stand ready to assist any family trying to navigate through the myriad choices and issues when pursuing proton treatment for their child.
PPF
Saturday, May 30, 2009
Saturday, May 23, 2009
Let the Blogging about Proton Begin!
My goal is to update this blog at least once a week. Not that I think I have some “in” to pediatric proton, but like everything else, when you focus you notice. One of the things that jumps out to me, is that proton versus photon in terms of killing cancer is running just about equal in studies published to date. The issue, not discussed often, is the after effects. Radiation at certain levels kills cells. This is the desired outcome: cell death. But when healthy cells surround cancer cells, you have to ask where does the radiation path start and stop? Please take notice of these differences. I spoke recently to a top physicist in regards to proton radiation, and he said, “This type of treatment should be standard of care for all cases of radiation to people in their mid-40’s….why destroy healthy tissue unnecessarily?” I got it. But why is it that this is such an uphill battle? Lack of published studies is one good reason and the cost another. But I digress.
I read a blog recently about the swine flu and the enormous outreach for this problem. Comparing it to children’s cancer, we, the parents of a child cancer patient, can’t understand why there isn’t the same outrage for children’s cancer. It is horrific to watch a child go through cancer treatment. I can honestly say in my life I have never used the word "horrific" until my baby got cancer.
I wanted to end this post by pointing out all the new centers that are coming up over the next 3 years. We go from 5 proton centers now to 11 centers by 2012 see: http://www.pediatricprotonfoundation.org/proton_treatment/u.s._proton_centers/
Lots of people obviously believe in it, and are willing to put their money where their mouth is. Thank you! And now I will follow and post about the dedication each will have to pediatrics. I know Philadelphia is making a dedicated room just for pediatrics, and Oklahoma is pushing to start pediatrics as soon as January 2010! Wahoo!
Stay tuned! Check us out @ www.pediatricprotonfoundation.org. We have loaded some new success stories of children that made it to proton. Check them out at http://www.pediatricprotonfoundation.org/proton_treatment/children_success_stories/
Thanks for following us!
Sunday, May 17, 2009
Pediatric Proton Foundation Officially Launches!
Yes, we are a few months later than we planned, but we are here. I am posting a copy of our first press release here.
VIRGINIA BEACH, VA. In 2007, Susan and Jim Ralston received the news every parent dreads: their 2-year-old son was diagnosed with spinal Ewing's sarcoma, a rare and aggressive cancer. This heart-breaking report was followed by a discovery from relatives that offered some comfort and hope: a relatively new radiation treatment, proton beam therapy. The Ralstons began a quest for more information and learned proton therapy could help their son improve his odds of beating cancer.
As a result of this first-hand experience and months of research, the Ralstons are launching the Pediatric Proton Foundation. Their mission in founding the Pediatric Proton Foundation is a simple one: to provide education, advocacy, and assistance to families in need of pediatric proton. Said founder Susan Ralston, “I am proud that we will be able to help other families and their children with cancer gain access to proton treatment across the country.” The first phase of the Foundation’s rollout plan includes a parent-friendly website loaded with everything a parent needs to help determine if proton is an appropriate treatment for their child and then how to quickly get to it. The next phase involves working to raise money to help researchers with pediatric proton studies and also to help families with the huge financial burden that comes with traveling to get proton beam treatment.
There are currently 5 proton centers operating in the United States with 5 others in some stage of development. Hampton University, near Virginia Beach, Virginia is developing a proton center expected to open in August 2010. “Proton beam treatment delivers targeted radiation to the cancerous site and avoids surrounding healthy tissue. This is critically important when treating children with cancer, since they are growing and many tissues are still developing” said Ralston. There are an estimated 13,000 children diagnosed annually in the United States with cancer and half of those cases are some type of bone, soft tissue or organ cancer, which means many of these cases could potentially be treated with proton therapy. “Dealing with cancer is one nightmare, and then dealing with the after effects of the actual cancer treatment is yet another nightmare. Anything we can do to improve cancer survival rates and reduce the after effects from the treatment needs to be pursued. These are America’s children – they deserve the best we have to offer here,” continued Ralston.
In mid-April, the Foundation was a first-time exhibitor at the “Pediatric Neuro-oncology in the Proton Era” meeting that was sponsored by Massachusetts General Hospital - the site with the world's greatest cumulative experience with pediatric proton neuro-oncology. The Foundation will be an exhibitor at the 51st Annual ASTRO (American Society for Radiation Oncology) meeting at McCormick Place West in Chicago November 1-5, 2009 with over 12,000 attendees expected from all over the world. “We hope that through our active involvement in the pediatric oncology world, we can bring more attention to this treatment option for children and therefore, more supporters to our cause of helping appropriate pediatric cancer cases access proton therapy,” said Ralston.
About the Foundation:
The Pediatric Proton Foundation is uniquely positioned as an independent, nonprofit charity that relies on voluntary funding from a variety of sources to be able to provide the most objective information available about pediatric cancer treatment at each proton center in the U.S. The dollars given are used to help support our mission of providing education, advocacy and assistance to families in need of pediatric proton. We are a non-profit 501(c)(3) charitable organization. You may be able to deduct some or the entire amount of your donation for tax purposes. Please consult your professional tax advisor.
For more information, visit the Pediatric Proton Foundation’s website at: www.pediatricprotonfoundation.org.
VIRGINIA BEACH, VA. In 2007, Susan and Jim Ralston received the news every parent dreads: their 2-year-old son was diagnosed with spinal Ewing's sarcoma, a rare and aggressive cancer. This heart-breaking report was followed by a discovery from relatives that offered some comfort and hope: a relatively new radiation treatment, proton beam therapy. The Ralstons began a quest for more information and learned proton therapy could help their son improve his odds of beating cancer.
As a result of this first-hand experience and months of research, the Ralstons are launching the Pediatric Proton Foundation. Their mission in founding the Pediatric Proton Foundation is a simple one: to provide education, advocacy, and assistance to families in need of pediatric proton. Said founder Susan Ralston, “I am proud that we will be able to help other families and their children with cancer gain access to proton treatment across the country.” The first phase of the Foundation’s rollout plan includes a parent-friendly website loaded with everything a parent needs to help determine if proton is an appropriate treatment for their child and then how to quickly get to it. The next phase involves working to raise money to help researchers with pediatric proton studies and also to help families with the huge financial burden that comes with traveling to get proton beam treatment.
There are currently 5 proton centers operating in the United States with 5 others in some stage of development. Hampton University, near Virginia Beach, Virginia is developing a proton center expected to open in August 2010. “Proton beam treatment delivers targeted radiation to the cancerous site and avoids surrounding healthy tissue. This is critically important when treating children with cancer, since they are growing and many tissues are still developing” said Ralston. There are an estimated 13,000 children diagnosed annually in the United States with cancer and half of those cases are some type of bone, soft tissue or organ cancer, which means many of these cases could potentially be treated with proton therapy. “Dealing with cancer is one nightmare, and then dealing with the after effects of the actual cancer treatment is yet another nightmare. Anything we can do to improve cancer survival rates and reduce the after effects from the treatment needs to be pursued. These are America’s children – they deserve the best we have to offer here,” continued Ralston.
In mid-April, the Foundation was a first-time exhibitor at the “Pediatric Neuro-oncology in the Proton Era” meeting that was sponsored by Massachusetts General Hospital - the site with the world's greatest cumulative experience with pediatric proton neuro-oncology. The Foundation will be an exhibitor at the 51st Annual ASTRO (American Society for Radiation Oncology) meeting at McCormick Place West in Chicago November 1-5, 2009 with over 12,000 attendees expected from all over the world. “We hope that through our active involvement in the pediatric oncology world, we can bring more attention to this treatment option for children and therefore, more supporters to our cause of helping appropriate pediatric cancer cases access proton therapy,” said Ralston.
About the Foundation:
The Pediatric Proton Foundation is uniquely positioned as an independent, nonprofit charity that relies on voluntary funding from a variety of sources to be able to provide the most objective information available about pediatric cancer treatment at each proton center in the U.S. The dollars given are used to help support our mission of providing education, advocacy and assistance to families in need of pediatric proton. We are a non-profit 501(c)(3) charitable organization. You may be able to deduct some or the entire amount of your donation for tax purposes. Please consult your professional tax advisor.
For more information, visit the Pediatric Proton Foundation’s website at: www.pediatricprotonfoundation.org.
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